Parent and staff perceptions of racism in a single-center neonatal intensive care unit.

IMPACT: In alignment with previous literature, NICU parents reported experiencing racism and NICU staff reported witnessing racism in the NICU. Our study also uniquely describes personal experiences with racism by staff in the NICU. NICU staff reported witnessing and experiencing racism more often than parents reported. Black staff reported witnessing and experiencing more racism than white staff. Differences in reporting is likely influenced by variations in lived experience, social identities, psychological safety, and levels of awareness. Future studies are necessary to prevent and accurately measure racism in the NICU.

Factors associated with posttraumatic stress and anxiety among the parents of babies admitted to neonatal care: a systematic review.

BACKGROUND: Posttraumatic stress (PTS) and anxiety are common mental health problems among parents of babies admitted to a neonatal unit (NNU). This review aimed to identify sociodemographic, pregnancy and birth, and psychological factors associated with PTS and anxiety in this population. METHOD: Studies published up to December 2022 were retrieved by searching Medline, Embase, PsychoINFO, Cumulative Index to Nursing and Allied Health electronic databases. The modified Newcastle-Ottawa Scale for cohort and cross-sectional studies was used to assess the methodological quality of included studies. This review was pre-registered in PROSPERO (CRD42021270526). RESULTS: Forty-nine studies involving 8,447 parents were included; 18 studies examined factors for PTS, 24 for anxiety and 7 for both. Only one study of anxiety factors was deemed to be of good quality. Studies generally included a small sample size and were methodologically heterogeneous. Pooling of data was not feasible. Previous history of mental health problems (four studies) and parental perception of more severe infant illness (five studies) were associated with increased risk of PTS, and had the strongest evidence. Shorter gestational age (≤ 33 weeks) was associated with an increased risk of anxiety (three studies) and very low birth weight (< 1000g) was associated with an increased risk of both PTS and anxiety (one study). Stress related to the NNU environment was associated with both PTS (one study) and anxiety (two studies), and limited data suggested that early engagement in infant's care (one study), efficient parent-staff communication (one study), adequate social support (two studies) and positive coping mechanisms (one study) may be protective factors for both PTS and anxiety. Perinatal anxiety, depression and PTS were all highly comorbid conditions (as with the general population) and the existence of one mental health condition was a risk factor for others. CONCLUSION: Heterogeneity limits the interpretation of findings. Until clearer evidence is available on which parents are most at risk, good communication with parents and universal screening of PTS and anxiety for all parents whose babies are admitted to NNU is needed to identify those parents who may benefit most from mental health interventions.

Family integrated care: State of art and future perspectives.

Family integrated care (FICare) represents a contemporary approach to health care that involves the active participation of families within the healthcare team. It empowers families to acquire knowledge about the specialised care required for their newborns admitted to neonatal intensive care unit (NICU) and positions them as primary caregivers. Healthcare professionals in this model act as mentors and facilitators during the hospitalisation period. This innovative model has exhibited notable enhancements in both short- and long-term health outcomes for neonates, alongside improved psychological well-being for families and heightened satisfaction among healthcare professionals. Initially designed for stable premature infants and their families, FICare has evolved to include critically ill premature and full-term infants. Findings from recent studies affirm the safety and feasibility of FICare as a NICU-wide model of care, benefiting all infants and families. The envisioned expansion of FICare focusses on sustainability and extending its implementation, recognising the necessity for tailored adaptations to suit varying diverse cultural and socio-economic contexts.

Home Visiting in California During the First Two Years of the COVID-19 Pandemic: A Repeated Cross-Sectional Study of Low-Income Pregnant and Parenting Caregivers.

CONTEXT: Prior to the COVID-19 pandemic, home visiting services for low-income children and families were provided almost entirely in person. Little is known about clients' experience of home visiting provided virtually by video or phone instead of, or in addition to, in-person home visiting. OBJECTIVE: To explore the views of clients in the California Work Opportunity and Responsibility to Kids (CalWORKs) Home Visiting Program (HVP) across California during the first 2 years of the pandemic. SETTING: Forty counties in California. PARTICIPANTS: CalWORKs HVP clients, currently enrolled or who left the program in the 6 months prior to each survey. MAIN OUTCOME MEASURES: Clients' ratings of participation in and experiences with the CalWORKs HVP services, as well as unmet needs. RESULTS: We collected 1617 surveys from clients across 3 survey rounds. Pandemic-related restrictions resulted in decreased frequency of home visits and a shift from in person to primarily virtual visits. As in-person home visit frequency decreased, there were significant declines in clients' level of agreement that they learned child development skills (P = .04), received parenting services (P = .015) or activities (P < .001), or received infant and child nutrition services (P = .003). There were no declines in level of agreement that the CalWORKs HVP improved the quality of life of clients and their children. DISCUSSION: Clients consistently rated the CalWORKs HVP as positively contributing to their and their children's well-being, regardless of the shift from in person to virtual visits. Clients' participation in some program components decreased over the evaluation. However, it is unknown if clients received fewer referrals, were hesitant to pursue the referrals, or if fewer services were available. Continued research is needed to evaluate the merits and disadvantages of virtual visits as in-person home visits resume postpandemic.

A Qualitative Analysis of Low-Income Pregnant and Parenting Caregivers' Experiences With Home Visiting in California During the First 2 Years of the COVID-19 Pandemic.

CONTEXT: In-person home visiting programs that provide evidence-based parenting and child development support improve outcomes for low-income children and families. The COVID-19 pandemic led to a shift from primarily in-person to virtual home visiting services, and little is known about clients' experience of home visiting in this context. OBJECTIVE: To describe the experience of clients in the California Work Opportunity and Responsibility to Kids (CalWORKs) Home Visiting Program (HVP) across California during the first 2 years of the pandemic. DESIGN: Three repeated cross-sectional surveys over a 2-year period. Clients' free-text responses to open-ended questions were analyzed using a directed content analysis approach. SETTING: Forty-one counties in California. PARTICIPANTS: Current CalWORKs HVP clients and those who left the program in the 6 months prior to each survey. MAIN OUTCOME MEASURES: Clients' experience of the CalWORKs HVP. RESULTS: Five main themes emerged: (1) benefits received from the program; (2) life challenges; (3) COVID-19-related or other program changes; (4) client dissatisfaction and suggestions for improvement; and (5) appreciation for the program. Clients valued the practical, financial, parenting, and interpersonal support provided to themselves and their children. Almost three-quarters commented on life challenges experienced during the program. Significant programmatic changes related to COVID-19 pandemic public health safety and organizational constraints impacted clients both positively and negatively. Very few clients experienced overt dissatisfaction with the program. Many clients expressed appreciation for the program, particularly the individualized and relational support offered by a consistent home visitor. CONCLUSIONS: The findings provide insights into the benefits and challenges experienced by clients receiving evidence-based home visiting services. The findings highlight the ongoing life challenges faced by clients who experience poverty, and how those challenges were exacerbated by a global pandemic. The CalWORKs HVP may buffer the substantial personal stresses clients experience related to parenting in the context of poverty and major public health challenges.

"'Oh gosh, why go?' cause they are going to look at me and not hire": intersectional experiences of black women navigating employment during pregnancy and parenting.

BACKGROUND: Workplace legal protections are important for perinatal health outcomes. Black birthing people are disproportionally affected by pregnancy discrimination and bias in the employment context and lack of family-friendly workplace policies, which may hinder their participation in the labor force and lead to gender and racial inequities in income and health. We aimed to explore Black pregnant women's experiences of pregnancy discrimination and bias when looking for work, working while pregnant, and returning to work postpartum. Additionally, we explored Black pregnant women's perspectives on how these experiences may influence their health. METHODS: Using an intersectional framework, where oppression is based on intersecting social identities such as race, gender, pregnancy, and socioeconomic status, we conducted an analysis of qualitative data collected for a study exploring the lived experience of pregnancy among Black pregnant women in New Haven, Connecticut, United States. Twenty-four women participated in semi-structured interviews (January 2017-August 2018). Interview transcripts were analyzed using grounded theory techniques. RESULTS: Participants expressed their desire to provide a financially secure future for their family. However, many described how pregnancy discrimination and bias made it difficult to find or keep a job during pregnancy. The following three themes were identified: 1) "You're a liability"; difficulty seeking employment during pregnancy; 2) "This is not working"; experiences on the job and navigating leave and accommodations while pregnant and parenting; and 3) "It's really depressing. I wanna work"; the stressors of experiencing pregnancy discrimination and bias. CONCLUSION: Black pregnant women in this study anticipated and experienced pregnancy discrimination and bias, which influenced financial burden and stress. We used an intersectional framework in this study which allowed us to more fully examine how racism and economic marginalization contribute to the lived experience of Black birthing people. Promoting health equity and gender parity means addressing pregnancy discrimination and bias and the lack of family-friendly workplace policies and the harm they cause to individuals, families, and communities, particularly those of color, throughout the United States.

Maternal mental health after infant discharge: a quasi-experimental clinical trial of family integrated care versus family-centered care for preterm infants in U.S. NICUs.

BACKGROUND: Involvement in caregiving and tailored support services may reduce the risk of mental health symptoms for mothers after their preterm infant's neonatal intensive care unit (NICU) discharge. We aimed to compare Family-Centered Care (FCC) with mobile-enhanced Family-Integrated Care (mFICare) on post-discharge maternal mental health symptoms. METHOD: This quasi-experimental study enrolled preterm infant (≤ 33 weeks)/parent dyads from three NICUs into sequential cohorts: FCC or mFICare. We analyzed post-discharge symptoms of perinatal post-traumatic stress disorder (PTSD) and depression using intention-to-treat and per protocol approaches. RESULTS: 178 mothers (89 FCC; 89 mFICare) completed measures. We found no main effect of group assignment. We found an interaction between group and stress, indicating fewer PTSD and depression symptoms among mothers who had higher NICU-related stress and received mFICare, compared with mothers who had high stress and received FCC (PTSD: interaction ß=-1.18, 95% CI: -2.10, -0.26; depression: interaction ß=-0.76, 95% CI: -1.53, 0.006). Per protocol analyses of mFICare components suggested fewer PTSD and depression symptoms among mothers who had higher NICU stress scores and participated in clinical team rounds and/or group classes, compared with mothers who had high stress and did not participate in rounds or classes. CONCLUSION: Overall, post-discharge maternal mental health symptoms did not differ between the mFICare and FCC groups. However, for mothers with high levels of stress during the NICU stay, mFICare was associated with fewer post-discharge PTSD and depression symptoms.

Mobile-Enhanced Family-Integrated Care for Preterm Infants: Nurse and Physician Views About Implementation.

BACKGROUND: The mobile-enhanced family-integrated care (mFICare) model addresses inconsistencies in family-centered care (FCC) delivery, with an evidence-based bundle of staff training, parent participation in rounds, parent classes, parent peer mentors, expanded role for parents in infant caregiving, and a parent-designed app. PURPOSE: Our aim was to explore the views of neonatal intensive care unit (NICU) nurses and physicians about mFICare implementation, including what worked well and what could be improved. METHODS: As part of a larger study to compare mFICare with FCC, we invited registered nurses, nurse practitioners, and fellow and attending physicians at the 3 study sites to participate in a survey about mFICare implementation. Data were analyzed with descriptive statistics and thematic analysis. RESULTS: The majority of the 182 respondents with experience delivering mFICare positively rated parent-led rounds, parent classes, parent skills acquisition, and the nurse-family relationship resulting from participation in mFICare. Respondents were less familiar or neutral regarding the parent peer mentor and app components of mFICare. Most respondents agreed that the mFICare program improved parent empowerment, and they shared suggestions for optimizing implementation. Physicians experienced more challenges with parent participation in rounds than nurses. Three themes emerged from the free-text data related to emotional support for parents, communication between staff and parents, and the unique experiences of families receiving mFICare. IMPLICATIONS FOR PRACTICE AND RESEARCH: The mFICare program was overall acceptable to nurses and physicians, and areas for improvement were identified. With implementation refinement, mFICare can become a sustainable model to enhance delivery of FCC in NICUs.

Overcoming patient safety concerns and integrating early mobility into pediatric intensive care unit nursing practice.

PURPOSE: Early Mobilization (EM) in Pediatric Intensive Care Units (PICU) is safe, feasible and improves outcomes for PICU patients, yet patient safety concerns persist among nurses which limits EM adoption. The purpose of this study was to explore how nurses incorporate EM into practice and balance their concerns for patient safety with the benefits of EM. DESIGN & METHODS: This focused ethnographic study included 15 in-depth interviews with 10 PICU nurses. Data were analyzed using thematic analysis. RESULTS: Two major categories were found which describe the clinical judgement and decision-making of PICU nurses regarding EM. The nurses' concerns for patient safety was the first major category. This included patient-level factors: hemodynamic stability, devices attached, patient's strength, and risk for falls and size. In the second major category, these safety concerns were overcome by applying a multiple step process which resulted in nurses performing EM despite their concerns. That process included: gaining comfort through experience, performing patient safety checks, working with therapists, learning from adverse events, and understanding existing evidence about the benefits of EM. CONCLUSIONS: The overarching theme was nurses' determination to preserve patient safety while ensuring patients could receive the benefits of EM. This theme describes the decisions, behaviors and processes that nurses enact to become more comfortable with EM despite their concerns for patient safety and potential adverse events while performing mobility activities. PRACTICE IMPLICATIONS: Creating opportunities for nurses to participate in EM may increase their willingness to overcome safety concerns and engage in these activities.

Parent Readiness for Their Preterm Infant's Neonatal Intensive Care Unit Discharge.

This study aims to examine the influence of hospital experience factors on parental discharge readiness, accounting for key background characteristics. Parents/guardians of infants 33 weeks of gestation or less at birth receiving neonatal intensive care at 6 sites were enrolled from April 2017 to August 2018. Participants completed surveys at enrollment, 3 weeks later, and at discharge. Multiple regression analysis assessed relationships between parental experience, well-being, and perceived readiness for infant discharge, adjusting for socioenvironmental, infant clinical, and parent demographic characteristics. Most (77%) of the 139 parents reported high levels of readiness for their infant's discharge and 92% reported high self-efficacy at discharge. The multiple regression model accounted for 40% of the variance in discharge readiness. Perceptions of family-centered care accounted for 12% of the variance; measures of parent well-being, anxiety, and parenting self-efficacy accounted for an additional 16% of the variance; parent characteristics accounted for an additional 9%; and infant characteristics accounted for less than 3% of the variance. Parental perceptions of the family-centeredness of the hospital experience, anxiety, and parenting self-efficacy accounted for a substantial proportion of the variance in readiness for discharge scores among parents of preterm infant. These influential perceptions are potentially modifiable by nursing-led interventions.

Relationship between social support and post-discharge mental health symptoms in mothers of preterm infants.

BACKGROUND: Social support is associated with decreased symptoms of postpartum mood and anxiety disorders (PMAD) in mothers of healthy infants, but less is known about social support and PMADs in mothers with preterm infants. The purpose of this study was to examine the relationship between social support and symptoms of PMADs reported by mothers in the months following hospital discharge of their preterm infant. METHODS: Mothers of infants less than 33 weeks gestational age were enrolled from neonatal intensive care units (NICU) at 6 sites. Mothers completed PMAD measures of depression, anxiety and post-traumatic stress approximately 3 months following their infant's discharge. Multivariable regression was used to evaluate relationships between social support and PMAD measures. RESULTS: Of 129 mothers, 1 in 5 reported clinically significant PMAD symptoms of: depression (24%), anxiety (19%), and post-traumatic stress (20%). Social support was strongly inversely associated with all 3 PMADs. Social support explained between 21% and 26% of the variance in depression, anxiety and post-traumatic stress symptoms. CONCLUSION: Increased social support may buffer PMAD symptoms in mothers of preterm infants after discharge. Research is needed to determine effective screening and interventions aimed at promoting social support for all parents during and following their infant's hospitalisation.

"Police shootings, now that seems to be the main issue" - Black pregnant women's anticipation of police brutality towards their children.

BACKGROUND: A disproportionate number of people who are killed by police each year are Black. While much attention rightly remains on victims of police brutality, there is a sparse literature on police brutality and perinatal health outcomes. We aimed to explore how Black pregnant women perceive police brutality affects them during pregnancy and might affect their children. METHODS: This qualitative study involved semi-structured interviews among 24 Black pregnant women in New Haven, Connecticut (January 2017 to August 2018). Interview questions explored neighborhood factors, safety, stressors during pregnancy, and anticipated stressors while parenting. Grounded theory informed the analysis. RESULTS: Participants, regardless of socioeconomic status, shared experiences with police and beliefs about anticipated police brutality, as summarized in the following themes: (1) experiences that lead to police distrust - "If this is the way that mommy's treated [by police]"; (2) anticipating police brutality - "I'm always expecting that phone call"; (3) stress and fear during pregnancy - "It's a boy, [I feel] absolutely petrified"; and (4) 'the talk' about avoiding police brutality - "How do you get prepared?" Even participants who reported positive experiences with police anticipated brutality towards their children. CONCLUSIONS: Interactions between Black people and police on a personal, familial, community, and societal level influenced how Black pregnant women understand the potential for police brutality towards their children. Anticipated police brutality is a source of stress during pregnancy, which may adversely influence maternal and infant health outcomes. Police brutality must be addressed in all communities to prevent harming the health of birthing people and their children.

The Deferred Action for Childhood Arrivals program and birth outcomes in California: a quasi-experimental study.

BACKGROUND: The Deferred Action for Childhood Arrivals (DACA) program provides temporary relief from deportation and work permits for previously undocumented immigrants who arrived as children. DACA faced direct threats under the Trump administration. There is select evidence of the short-term impacts of DACA on population health, including on birth outcomes, but limited understanding of the long-term impacts. METHODS: We evaluated the association between DACA program and birth outcomes using California birth certificate data (2009-2018) and a difference-in-differences approach to compare post-DACA birth outcomes for likely DACA-eligible mothers to birth outcomes for demographically similar DACA-ineligible mothers. We also separately compared birth outcomes by DACA eligibility status in the first 3 years after DACA passage (2012-2015) and in the subsequent 3 years (2015-2018) - a period characterized by direct threats to the DACA program - as compared to outcomes in the years prior to DACA passage. RESULTS: In the 7 years after its passage, DACA was associated with a lower risk of small-for-gestational age (- 0.018, 95% CI: - 0.035, - 0.002) and greater birthweight (45.8 g, 95% CI: 11.9, 79.7) for births to Mexican-origin individuals that were billed to Medicaid. Estimates were consistent but of smaller magnitude for other subgroups. Associations between DACA and birth outcomes were attenuated to the null in the period that began with the announcement of the Trump U.S. Presidential campaign (2015-2018), although confidence intervals overlapped with estimates from the immediate post-DACA period. CONCLUSIONS: These findings suggest weak to modest initial benefits of DACA for select birthweight outcomes during the period immediately following DACA passage for Mexican-born individuals whose births were billed to Medicaid; any benefits were subsequently attenuated to the null. The benefits of DACA for population health may not have been sufficient to counteract the impacts of threats to the program's future and heightened immigration enforcement occurring in parallel over time.

Neonatal outcomes from a quasi-experimental clinical trial of Family Integrated Care versus Family-Centered Care for preterm infants in U.S. NICUs.

BACKGROUND: Family Integrated Care (FICare) benefits preterm infants compared with Family-Centered Care (FCC), but research is lacking in United States (US) Neonatal Intensive Care Units (NICUs). The outcomes for infants of implementing FICare in the US are unknown given differences in parental leave benefits and health care delivery between the US and other countries where FICare is used. We compared preterm weight and discharge outcomes between FCC and mobile-enhanced FICare (mFICare) in the US. METHODS: In this quasi-experimental study, we enrolled preterm infant (≤ 33 weeks)/parent dyads from 3 NICUs into sequential cohorts: FCC or mFICare. Our primary outcome was 21-day change in weight z-scores. Our secondary outcomes were nosocomial infection, bronchopulmonary dysplasia (BPD), retinopathy of prematurity (ROP), and human milk feeding (HMF) at discharge. We used intention-to-treat analyses to examine the effect of the FCC and mFICare models overall and per protocol analyses to examine the effects of the mFICare intervention components. FINDINGS: 253 infant/parent dyads participated (141 FCC; 112 mFICare). There were no parent-related adverse events in either group. In intention-to-treat analyses, we found no group differences in weight, ROP, BPD or HMF. The FCC cohort had 2.6-times (95% CI: 1.0, 6.7) higher odds of nosocomial infection than the mFICare cohort. In per-protocol analyses, we found that infants whose parents did not receive parent mentoring or participate in rounds lost more weight relative to age-based norms (group-difference=-0.128, CI: -0.227, -0.030; group-difference=-0.084, CI: -0.154, -0.015, respectively). Infants whose parents did not participate in rounds or group education had 2.9-times (CI: 1.0, 9.1) and 3.8-times (CI: 1.2, 14.3) higher odds of nosocomial infection, respectively. CONCLUSION: We found indications that mFICare may have direct benefits on infant outcomes such as weight gain and nosocomial infection. Future studies using implementation science designs are needed to optimize intervention delivery and determine acute and long-term infant and family outcomes. CLINICAL TRIAL REGISTRATION: NCT03418870 01/02/2018.

Using Collective Impact to Advance Birth Equity: A Comparison of Two Cross-Sector Efforts in California.

BACKGROUND: Preterm birth, defined as birth at gestational age before 37 weeks, is a major public health concern with marked racial disparities driven by underlying structural and social determinants of health. To achieve population-level reductions in preterm birth and to reduce racial inequities, the University of California, San Francisco's California Preterm Birth Initiative catalyzed two cross-sector coalitions in San Francisco and Fresno using the Collective Impact (CI) approach. PURPOSE: The purpose of this study is to compare two preterm birth-focused CI efforts and identify common themes and lessons learned. METHODS: Researchers conducted in-depth interviews (n = 19) and three focus groups (n = 20) with stakeholders to assess factors related to collaboration. Transcripts were coded and analyzed using modified grounded theory. Findings were compared by year of data collection (first and second cycle in each location) and geographic location (Fresno and San Francisco) and discussed with CI participants for input. RESULTS: Although both communities adopted the core tenets of CI to address preterm birth and racial inequities, each employed distinct organizational structures, strategic frameworks, and interventions. Common themes emerged around the importance of authentic community engagement, transparency in the process of prioritization and decision-making, addressing racism as a root cause of disparities in birth outcomes, and candid communication among partners. CONCLUSION: Future CI efforts, particularly those catalyzed by academic institutions, should ensure community members are active partners in program development and decision-making. CI efforts focused on combatting racial health inequities should center racism as a root cause and build capacity among coalition partners.

Improving Family-Centered Care for Infants in Neonatal Intensive Care Units: Recommendations From Frontline Healthcare Professionals.

BACKGROUND: Family-centered care is a philosophy and healthcare delivery model adopted by many neonatal intensive care units (NICUs) worldwide, yet practice varies widely. PURPOSE: The aim of this study was to synthesize recommendations from frontline NICU healthcare professionals regarding family-centered care. METHODS: Data were obtained from the baseline phase of a multicenter quasi-experimental study comparing usual family-centered NICU care (baseline) with mobile-enhanced family integrated care (intervention). Members of the NICU clinical care team completed a family-centered care survey and provided free-text comments regarding practice of family-centered care in their NICU and recommendations for improvement. The comments were analyzed using a directed content analysis approach by a research team that included NICU nurses and parents. RESULTS: Of the 382 NICU healthcare providers from 6 NICUs who completed the survey, 68 (18%) provided 89 free-text comments/recommendations about family-centered care. Almost all comments were provided by nurses (91%). Six main themes were identified: language translation; communication between staff and families; staffing and workflow; team culture and leadership; education; and NICU environment. The need for greater resources for staffing, education, and environmental supports was prominent among the comments, as was team culture and staff-parent communications. IMPLICATIONS FOR PRACTICE: The NICU healthcare professionals identified a range of issues that support or impede delivery of family-centered care and provided actionable recommendations for improvement. IMPLICATIONS FOR RESEARCH: Future research should include economic analyses that will enable determination of the return on investment so that NICUs can better justify the human and capital resources needed to implement high-quality family-centered care.

Effectiveness of parental education about pain in the neonatal period on knowledge, attitudes, and practices: A systematic review and meta-analysis.

Background: Despite the availability of effective, safe, and feasible pain management strategies, infant pain remains undertreated. Parents can play a key role in advocating for or delivering pain management strategies if they are educated. To date, a quantitative synthesis of the effectiveness of parental education about pain management in the neonatal period has not been performed. Objective: To systematically review the effectiveness of parental education during the neonatal period on pain management in infancy. Methods: MEDLINE, EMBASE, PsycInfo, CINAHL, and the Cochrane Library were searched for relevant randomized controlled trials (RCTs) and non-randomized trials (NRTs) that evaluated parental education with respect to pain management during the neonatal period in any setting from inception to February 2021. Screening of article titles and abstracts and data extraction were performed in duplicate. The risk of bias was assessed using the Cochrane Risk Bias Tool 2.0 and the Risk of Bias in Non-randomized Studies of Interventions for RCTs and NRTs, respectively. As per the GRADE methodology, critically important and important outcomes were identified. Critically important outcomes included utilization of pain management strategies and infant pain. Important outcomes included parental knowledge about pain mitigation strategies, parental attitudes, compliance with painful procedures, procedure outcomes, and safety. Data were combined and presented as relative risk (RR) or mean or standardized mean difference (MD or SMD) with 95% confidence interval (CI). Results: Of the six studies eligible for inclusion, four studies were RCTs and two studies were NRTs. Written information and/or video were used to deliver parental education during the neonatal period in hospital settings in all studies. Four studies (two RCTs and two NRTs) reported on critically important outcomes. The risk of bias was low for the two RCTs and moderate to serious for the two NRTs. Utilization of pain management strategies was assessed for heel lance in the first 48 hours of life in two studies and for vaccine injection at 2 to 6 months of life in two studies. Higher utilization rate for pain management strategies was reported in the pain education group in three studies (RR 1.15, 95% CI 1.04, 1.26; N=2712). There was no difference in the mean number of pain management strategies used in one NRT tracking utilization tracking utilization as continuous data (MD 0.20, 95% CI -0.01, 0.41; N=178). Parent-reported infant pain scores were lower in the pain education group in one RCT (MD -0.16, 95% CI -0.27, -0.06; N=1615). The quality of evidence for the outcome of utilization of pain management strategies was very low while for the outcome of infant pain the quality of evidence was moderate. Five studies (3 RCTs and 2 NRTs) reported on important outcomes. The risk of bias was low for two RCTs and high for one RCT and moderate to serious for the two NRTs. Parental knowledge about pain management strategies (SMD 0.54, 95% CI 0.26, 0.82), parental confidence in their ability to manage pain (SMD 0.24, 95% CI 0.14, 0.34), parental satisfaction with education (MD 1.18, 95% CI 0.84, 1.52) and parental satisfaction with pain management (RR 1.05. 95% CI 1.01, 1.08) were increased in the pain education group. None of the included studies reported on procedural outcomes. No adverse events with the pain education nor the use of pain management interventions were reported in one study. Conclusions: Parental education in the neonatal period was effective in increasing utilization of pain management strategies during painful procedures. Reduction of pain in infants is based on one study of moderate quality. Furthermore, parental education increased parental knowledge about pain management strategies, confidence in their ability to manage infant pain, and satisfaction with the education and pain management. Parental pain education should be incorporated into postnatal care.

Implementing Rapid Whole-Genome Sequencing in Critical Care: A Qualitative Study of Facilitators and Barriers to New Technology Adoption.

OBJECTIVE: To characterize the views of members of the multi-disciplinary team regarding the implementation of rapid whole-genome sequencing (rWGS) as a first-tier test for critically ill children in diverse children's hospital settings. STUDY DESIGN: Qualitative interviews informed by implementation science theory were conducted with the multidisciplinary patient care teams and hospital leaders at each of the 5 tertiary care children's hospitals involved in a statewide rWGS implementation project. RESULTS: Our analysis revealed 5 key themes regarding the implementation process across the sites: the need for rWGS champions, educational needs and strategies, negotiating decision-making roles and processes, workflows and workarounds, and perceptions about rWGS. From the findings a composite clinical workflow diagram was developed to summarize all of the processes involved in the implementation of the test, and the key areas where implementation practices differed. CONCLUSIONS: These findings provide insights for design of interventions to support adoption, scale-up, and sustainability of rWGS and other novel technologies in neonatal and pediatric critical care settings.

Mortality and Major Neonatal Morbidity in Preterm Infants with Serious Congenital Heart Disease.

OBJECTIVE: To investigate the trends of 1-year mortality and neonatal morbidities in preterm infants with serious congenital heart disease (CHD). STUDY DESIGN: This cohort study used a population-based administrative dataset of all liveborn infants of 26-36 weeks gestational age with serious CHD born in California between 2011 and 2017. We assessed 1-year mortality and major neonatal morbidities (ie, retinopathy of prematurity, bronchopulmonary dysplasia, necrotizing enterocolitis, intraventricular hemorrhage grade >2, and periventricular leukomalacia) across the study period and compared these outcomes with those in infants without CHD. RESULTS: We identified 1921 preterm infants with serious CHD. The relative risk (RR) of death decreased by 10.6% for each year of the study period (RR, 0.89; 95% CI, 0.84-0.95), and the RR of major neonatal morbidity increased by 8.3% for each year (RR, 1.08; 95% CI, 1.02-1.15). Compared with preterm neonates without any CHD (n = 234 522), the adjusted risk difference (ARD) for mortality was highest at 32 weeks of gestational age (9.7%; 95% CI, 8.3%-11.2%), that for major neonatal morbidity was highest at 28 weeks (21.9%; 95% CI, 17.0%-26.9%), and that for the combined outcome was highest at 30 weeks (26.7%; 95% CI, 23.3%-30.1%). CONCLUSIONS: Mortality in preterm neonates with serious CHD decreased over the last decade, whereas major neonatal morbidities increased. Preterm infants with a gestational age of 28-32 weeks have the highest mortality or morbidity compared with their peers without CHD. These results support the need for specialized and focused medical neonatal care in preterm neonates with serious CHD.

Early-life epilepsy after acute symptomatic neonatal seizures: A prospective multicenter study.

OBJECTIVE: We aimed to evaluate early-life epilepsy incidence, seizure types, severity, risk factors, and treatments among survivors of acute neonatal seizures. METHODS: Neonates with acute symptomatic seizures born 7/2015-3/2018 were prospectively enrolled at nine Neonatal Seizure Registry sites. One-hour EEG was recorded at age three months. Post-neonatal epilepsy and functional development (Warner Initial Developmental Evaluation of Adaptive and Functional Skills - WIDEA-FS) were assessed. Cox regression was used to assess epilepsy-free survival. RESULTS: Among 282 infants, 37 (13%) had post-neonatal epilepsy by 24-months [median age of onset 7-months (IQR 3-14)]. Among those with post-neonatal epilepsy, 13/37 (35%) had infantile spasms and 12/37 (32%) had drug-resistant epilepsy. Most children with post-neonatal epilepsy had abnormal neurodevelopment at 24-months (WIDEA-FS >2SD below normal population mean for 81% of children with epilepsy vs 27% without epilepsy, RR 7.9, 95% CI 3.6-17.3). Infants with severely abnormal neonatal EEG background patterns were more likely to develop epilepsy than those with mild/moderate abnormalities (HR 3.7, 95% CI 1.9-5.9). Neonatal EEG with ≥3 days of seizures also predicted hazard of epilepsy (HR 2.9, 95% CI 1.4-5.9). In an adjusted model, days of neonatal EEG-confirmed seizures (HR 1.4 per day, 95% CI 1.2-1.6) and abnormal discharge examination (HR 3.9, 95% CI 1.9-7.8) were independently associated with time to epilepsy onset. Abnormal (vs. normal) three-month EEG was not associated with epilepsy. SIGNIFICANCE: In this multicenter study, only 13% of infants with acute symptomatic neonatal seizures developed post-neonatal epilepsy by age 24-months. However, there was a high risk of severe neurodevelopmental impairment and drug-resistant seizures among children with post-neonatal epilepsy. Days of EEG-confirmed neonatal seizures was a potentially modifiable epilepsy risk factor. An EEG at three months was not clinically useful for predicting epilepsy. These practice changing findings have implications for family counseling, clinical follow-up planning, and future research to prevent post-neonatal epilepsy.