NANN Membership Recommendations: Opportunities to Advance Racial Equity Within the Organization.

BACKGROUND: Neonatal care has advanced significantly in recent years, yet racial health inequities persist in the neonatal intensive care unit (NICU), with infants from racial and ethnic minority groups less likely to receive recommended treatment. Healthcare providers acknowledge that there are steps that can be taken to increase knowledge and awareness regarding health inequities. PURPOSE: To better understand current health equity-related initiatives in the neonatal community and solicit feedback from National Association of Neonatal Nurses (NANN) membership about advancing racial equity within the organization. METHODS: A cross-sectional survey was conducted in January 2021. The anonymous, onetime survey was distributed to active NANN members via SurveyMonkey and included questions related to racial equity initiatives, recommendations, and demographics. Data analysis was conducted using an exploratory approach using descriptive statistics, and thematic analysis was used to summarize responses to open-ended questions. RESULTS: There were 325 members who completed the full survey, of whom were White (83%), female (96%), staff nurses (42%), and those with more than 16 years of experience (69%), and most (69%) were familiar with NANN's racial equity position statement. Recommendations were summarized into the following themes: (1) research, (2) education, (3) workforce diversity, (4) communication, (5) scholarships, (6) resources, and (7) community outreach. IMPLICATIONS FOR PRACTICE AND RESEARCH: NANN members offered clear and actionable recommendations to advance health equity within the neonatal community and organization, which included offering more diversity, inclusion, and equity education at the annual conferences, in ANC articles, and newsletters, and the creation of scholarships or reduced membership fees to encourage diverse enrollment in the organization.

Pilot Testing Transcreated Spanish-Language Study Materials for Symptom Research With Infants and Parents in the Neonatal Intensive Care Unit.

BACKGROUND: Rising admission rates of Hispanic/Latinx families to the neonatal intensive care unit (NICU) have increased the number of non-English-speaking individuals who may wish to participate in research studies. However, a lack of appropriately translated research study materials may limit the opportunity for these families to be involved in research that could impact the care that infants and families receive in the NICU. PURPOSE: The primary purpose was to pilot test study materials that were transcreated from English to Spanish with the assistance of a bilingual community advisory board with Spanish-speaking parents of NICU infants. METHODS: A total of 19 Spanish-speaking parents (15 mothers and 4 fathers) who were representative of the population of interest completed paper-and-pencil surveys, along with a cognitive interview. Preliminary data related to decision-making and goals of care, infant symptoms, and their experiences in the NICU were also collected. RESULTS: The internal reliability of the transcreated study instruments ranged from good to excellent (α= 0.82-0.99). Participants reported that study materials were not offensive and did not make them feel uncomfortable; however, they found some words/phrases to be confusing. Parents had the opportunity to provide suggested wording changes. IMPLICATIONS FOR PRACTICE AND RESEARCH: Language barriers and a lack of cultural responsiveness can affect the care that infants and their families receive. More accurate and culturally appropriate transcreation of study materials can remove barriers to research participation and facilitate better communication with non-English-speaking families, which may lead to the development of better-informed evidence-based interventions and clinical practices in the NICU.

Preliminary Validation of the Psychosocial Assessment Tool in the Neonatal Intensive Care Unit.

OBJECTIVE: Research suggests families whose infants are admitted to the Neonatal Intensive Care Unit (NICU) experience elevated distress and may have pre-existing risk factors for maladjustment. This study sought to validate the newly developed Psychosocial Assessment Tool (PAT-NICU/Cardiac Intensive Care Unit [CICU]), a comprehensive screening measure for family psychosocial risk in the NICU. METHODS: The sample included 171 mothers, who completed the PAT-NICU/CICU and other related measures within 2 weeks of their infant's NICU admission at a level 4 unit within a large pediatric hospital. PAT-NICU/CICU scores were compared to a companion risk survey completed by NICU social workers. Test-retest reliability was assessed through repeated measures at 2-month follow-up. RESULTS: Analyses suggest the PAT-NICU/CICU is effective in classifying psychosocial risk. This is supported by statistically significant correlations between the PAT-NICU/CICU and validated measures, in addition to elevated scores on concurrent measures by risk classification. Internal consistency, test-retest reliability, and acceptability for the PAT-NICU/CICU were satisfactory. CONCLUSIONS: This preliminary study demonstrates the validity, reliability, and acceptability of the PAT-NICU/CICU as a psychosocial screening tool to aid identification of families who may benefit from supportive services during NICU admission. This new measure is a more comprehensive tool that assesses a wide variety of risk factors and stress responses. However, future studies of this measure are needed with more diverse samples. Prompt screening of NICU parents may facilitate earlier linkage with appropriate levels of resources or intervention. This research is crucial in improving risk assessment and psychosocial care for families in the NICU.

Inclusion of Spanish-Speaking Families in NICU Symptom Research Using a Community Advisory Board.

BACKGROUND: Admission rates of Hispanic/Latinx families to the neonatal intensive care unit (NICU) are rising, yet knowledge regarding their experiences is limited. Non-English-speaking families are often excluded from research because study measures are not available in their language. The inclusion of these families in NICU research is crucial to understand the impact of cultural and language barriers in infant and family care, and the translation of study measures into Spanish could better ensure that these families' perspectives are included. However, previous research has utilized the standard translation-backtranslation method with which problems have been noted. PURPOSE: This article describes the planning, preparation, and action phases that were completed with the use of a community advisory board (CAB) to prepare and transcreate research study materials from English to Spanish for pilot testing. METHODS: Community members of interest were invited to form the CAB, and 2 meetings were held to review study materials in the English and Spanish versions. Prior to the second meeting, a professional translation company translated study materials from English to Spanish. RESULTS: Feedback from the CAB ensured consistent content and reading levels, and culturally appropriate language usage. The CAB also provided suggestions to the research protocol and advised sensitive methods of recruitment and measure administration. IMPLICATIONS FOR PRACTICE AND RESEARCH: More accurate and culturally appropriate transcreation of study measures can reduce barriers to research participation and facilitate better communication with non-English-speaking families in health equity research to better inform evidence-based interventions and clinical practices across diverse groups.

Systematic review of family engagement interventions in neonatal, paediatric, and adult ICUs.

AIMS AND OBJECTIVES: The purpose of this systematic review was to evaluate interventions that have been used to engage families in direct care activities (active family engagement) in adult, paediatric, and neonatal intensive care unit (ICU) settings. BACKGROUND: Family engagement is universally advocated across ICU populations and practice settings; however, appraisal of the active family engagement intervention literature remains limited. SEARCH STRATEGY: Ovid Medline, PsycArticles & PsycInfo, Scopus, and CINAHL were searched for family interventions that involved direct care of the patient to enhance the psychological, physical, or emotional well-being of the patient or family in neonatal, paediatric, or adult ICUs. INCLUSION/EXCLUSION CRITERIA: Studies were included if an active family engagement intervention was evaluated. Studies were excluded if they were not published in English or reported non-interventional research. RESULTS: A total of 6210 abstracts were screened and 19 studies were included. Most studies were of low to moderate quality and were conducted in neonatal ICUs within the United States. Intervention dosage and frequency varied widely across studies. The interventions focused on developmental care (neonatal ICU) and involved families in basic patient care. Family member outcomes measured included satisfaction, stress, family-centred care, confidence, anxiety, and depression. Most studies found improvements in one or more outcomes. CONCLUSIONS: There is a paucity of literature about active family engagement interventions, especially in adult and paediatric populations. The optimal dosage and frequency of family engagement interventions remains unknown. Our systematic review found that data are limited on the relationship between family engagement and patient outcomes, and provides a timely appraisal to guide future research. RELEVANCE TO CLINICAL PRACTICE: Further research on the efficacy of family engagement interventions is warranted. The translation of active family engagement interventions into clinical practice should also be supported.

Integrative Review of Gut Microbiota and Expression of Symptoms Associated With Neonatal Abstinence Syndrome.

BACKGROUND: Neonatal exposure and subsequent withdrawal from maternal substance use disorder are a growing problem and consequence of the current opioid epidemic. Neonatal abstinence syndrome (NAS) is defined by a specified cluster of symptoms with treatment guided by the expression and severity of these symptoms. The mechanisms or pathophysiology contributing to the development of NAS symptoms are not well known, but one factor that may influence NAS symptoms is the gut microbiota. OBJECTIVES: The purpose of this integrative review was to examine evidence that might show if and how the gut microbiota influence expression and severity of symptoms similar to those seen in NAS. METHODS: Using published guidelines, a review of research studies that focused on the gut microbiome and symptoms similar to those seen in NAS was conducted, using the Cochrane, EMBASE, and Scopus databases, from 2009 through 2019. RESULTS: The review results included findings of aberrant microbial diversity, differences in microbial communities between study groups, and associations between specific taxa and symptoms. In studies involving interventions, there were reports of improved microbial diversity, community structure, and symptoms. DISCUSSION: The review findings provide evidence that the gut microbiota may play a role in modifying variability in the expression and severity of symptoms associated with NAS. Future research should focus on examining the gut microbiota in infants with and without the syndrome as well as exploring the relationship between symptom expression and aberrant gut microbiota colonization in infants with NAS.

Behavioral Observation of Infants With Life-Threatening or Life-Limiting Illness in the Neonatal Intensive Care Unit.

BACKGROUND: Infants in the neonatal intensive care unit experience aversive stimuli that cause pain and distress. Maintaining adequate relief from pain and distress is challenging because of infants' varying ages and stages of development and their nonverbal status. Thus, pain and distress must be interpreted by a healthcare provider or other proxy from their own observations or perceptions. There is no standard research or clinical measure for pain and distress in infants. OBJECTIVE: The purpose of this analysis was to evaluate the use of the COMFORT Behavior (COMFORT-B) Scale as a measure of pain and distress in infants diagnosed with life-threatening or life-limiting illnesses in the neonatal intensive care unit in comparison with the nurse-documented Neonatal Pain, Agitation and Sedation Scale; the infants' Technology Dependence Scale; and the mothers' report of total perceived symptom scores. METHODS: Infants diagnosed with life-threatening or life-limiting illnesses and hospitalized in a Level IV neonatal intensive care unit in the Midwestern United States and their parents were included. Measurement of pain and distress in infants was collected weekly from enrollment through 12 weeks or until discharge, whichever occurred first. Observations for the COMFORT-B Scale were conducted before and after standard caregiving activities. Pearson r correlations were used to compare means between pain and distress, technology dependence, and mothers' total perceived symptom scores over time. RESULTS: Data from 78 infants (46 male and 32 female infants) of ages 23-41 weeks of gestation at birth were analyzed. No correlations were found among the COMFORT-B Scale; the Neonatal Pain, Agitation and Sedation Scale; and mothers' total perceived symptom scores. Moderate correlations were found among the Technology Dependence Scale; mothers' total perceived symptom scores; and the Neonatal Pain, Agitation and Sedation Scale. DISCUSSION: Performing COMFORT-B observations can be challenging, and it is unclear whether the information obtained from the COMFORT-B Scale added to the assessment of the infant's pain and distress that is typically recorded in the health record or from parents. Further evaluation is needed to determine if it is more reliable to collect the Neonatal Pain, Agitation and Sedation Scale scores rather than conduct observations using the COMFORT-B Scale in studies of infants with life-threatening and life-limiting illnesses in the neonatal intensive care unit.

Perceived Infant Well-Being and Self-Reported Distress in Neonatal Nurses.

BACKGROUND: Infants who are admitted to a neonatal intensive care unit (NICU) may experience significant symptom burden. Parents are often distressed by these symptoms, which can affect their long-term coping and distress. There is limited research examining nurse perceptions of infant well-being (symptoms, suffering, and quality of life [QOL]) and associations with nurse distress. OBJECTIVE: The objective of this descriptive study was to explore associations between nurse perceptions of infant well-being and self-reported distress. METHODS: Nurses caring for infants with potentially life-threatening/life-limiting conditions were recruited from a Level IV NICU in the Midwestern United States as a part of a study on infant symptom burden. Nurses reported their perceptions of infant well-being and their own distress on a 5-point Likert scale. Surveys were administered at the bedside weekly for up to 12 weeks, depending on length of stay. Infant suffering and QOL were examined in relation to nurse distress. A cross-classified multilevel model was used to account for dependence within nurse and within patient. RESULTS: A total of 593 surveys were collected from nurses. Using a cross-classified multilevel model with variables entered simultaneously, nurse perceptions of greater infant suffering and lower infant QOL were significantly associated with greater nurse distress. DISCUSSION: Preliminary evidence shows that greater perceived infant suffering and lower perceived infant QOL may be associated with greater levels of self-reported distress in NICU nurses. Further work is needed to better understand factors related to symptom management in the NICU and the potential role of caregiver distress and compassion fatigue in NICU nurses.

Healthcare Satisfaction and Unmet Needs Among Bereaved Parents in the NICU.

BACKGROUND: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with care and may be at greater risk for distress after the death. Despite calls to improve EOL care for children, limited research has examined the EOL experiences of families in the NICU. PURPOSE: We examined parent perceptions of their infant's EOL experience (eg, symptom burden and suffering) and satisfaction with care in the NICU. METHODS/SEARCH STRATEGY: Forty-two mothers and 27 fathers (representing 42 infants) participated in a mixed-methods study between 3 months and 5 years after their infant's death (mean = 39.45 months, SD = 17.19). Parents reported on healthcare satisfaction, unmet needs, and infant symptoms and suffering in the final week of life. FINDINGS/RESULTS: Parents reported high levels of healthcare satisfaction, with relative strengths in providers' technical skills and inclusion of the family. Greater perceived infant suffering was associated with lower healthcare satisfaction and fewer well-met needs at EOL. Parents' understanding of their infant's condition, emotional support, communication, symptom management, and bereavement care were identified as areas for improvement. IMPLICATIONS FOR PRACTICE: Parents value comprehensive, family-centered care in the NICU. Additionally, monitoring and alleviating infant symptoms contribute to greater parental satisfaction with care. Improving staff knowledge about EOL care and developing structured bereavement follow-up programs may enhance healthcare satisfaction and family outcomes. IMPLICATIONS FOR RESEARCH: Prospective studies are needed to better understand parental perceptions of EOL care and the influence on later parental adjustment.

Use of an Electronic Reporting Tool and Clinical Surveillance Process in the Neonatal Intensive Care Unit to Decrease Risk for Central Venous Catheter Complications Associated With Tip Migration.

This quality improvement project formalized central venous catheter tip surveillance augmented by the use of electronic patient reporting tool. The project setting was a large level IV academic neonatal intensive care unit with a representative convenience sample of patients with central venous catheters and quality improvement reports of complications from tip migration. Providers received education before implementation of a central venous catheter tip surveillance program using a revised electronic reporting tool was initiated. Provider evaluations of the electronic reporting tool included compliance with the guidelines and use of the tool in multidisciplinary patient rounds, and were entered into a database for analysis. Nine evaluations of the electronic reporting tool were completed, with an average of 97% compliance with guidelines. Seven evaluations during multidisciplinary patient rounds using the reporting tool data demonstrated use by both resident physicians and advanced practice nurses. Central venous catheter patient data were reviewed after process implementation. Overall, infant central venous catheter complications related to tip migration decreased following implementation. Therefore, the use of an electronic reporting tool improved compliance with evidence-based clinical practice guidelines and resulted in a decrease in the risk for central venous line complications related to tip migration in this setting.

The future of pediatric nursing science.

The provision of safe and effective nursing care to children is dependent upon pediatric nurse scientists creating knowledge that guides and directs day-to-day nursing practice. Current trends demonstrating steady decreases of pediatric nurses and inadequate numbers of PhD-prepared pediatric nurse scientists put the health of our children at risk. The purposes of this paper are to (1) summarize current health care demands in pediatrics, (2) present our concern that the number of pediatric nurse scientists is inadequate to generate foundational knowledge to guide pediatric nursing practice, (3) present our perspectives on factors influencing the number of pediatric nurse scientists, and (4) recommend specific actions for nursing leaders, nursing faculty, and professional nursing organizations to increase the depth and breadth of pediatric nursing science to meet current and future pediatric care needs.

The emotional impact of errors or adverse events on healthcare providers in the NICU: The protective role of coworker support.

AIMS: To examine the impact of errors or adverse events on emotional distress and professional quality of life in healthcare providers in the neonatal intensive care unit, and the moderating role of coworker support. BACKGROUND: Errors or adverse events can result in negative outcomes for healthcare providers. However, the role of coworker support in improving emotional and professional outcomes has not been examined. DESIGN: A cross-sectional online survey from a quality improvement initiative to train peer supporters in a neonatal intensive care unit. METHODS: During 2015, 463 healthcare providers in a neonatal intensive care unit completed a survey assessing their experiences with an error or adverse event, anxiety, depression, professional quality of life and coworker support. RESULTS: Compared with those who did not experience an error or adverse event (58%), healthcare providers who observed (23%) or were involved (19%) in an incident reported higher levels of anxiety and secondary traumatic stress. Those who were involved in an event reported higher levels of depression and burnout. Differences between the three groups (no event, observation and involvement) for compassion satisfaction were non-significant. Perceived coworker support moderated the association between experiencing an event and both anxiety and depression. Specifically, experiencing an event was associated with higher levels of anxiety and depression when coworkers were perceived as low in supportiveness, but not when they were viewed as highly supportive. CONCLUSION: Findings suggest that errors or adverse events can have a harmful impact on healthcare providers and that coworker support may reduce emotional distress.

Outcomes of Preterm Infants following Discussions about Withdrawal or Withholding of Life Support.

OBJECTIVES: To describe the frequency of postnatal discussions about withdrawal or withholding of life-sustaining therapy (WWLST), ensuing WWLST, and outcomes of infants surviving such discussions. We hypothesized that such survivors have poor outcomes. STUDY DESIGN: This retrospective review included registry data from 18 centers of the National Institute of Child Health and Human Development Neonatal Research Network. Infants born at 22-28 weeks of gestation who survived >12 hours during 2011-2013 were included. Regression analysis identified maternal and infant factors associated with WWLST discussions and factors predicting ensuing WWLST. In-hospital and 18- to 26-month outcomes were evaluated. RESULTS: WWLST discussions occurred in 529 (15.4%) of 3434 infants. These were more frequent at 22-24 weeks (27.0%) compared with 27-28 weeks of gestation (5.6%). Factors associated with WWLST discussion were male sex, gestational age (GA) of ≤24 weeks, birth weight small for GA, congenital malformations or syndromes, early onset sepsis, severe brain injury, and necrotizing enterocolitis. Rates of WWLST discussion varied by center (6.4%-29.9%) as did WWLST (5.2%-20.7%). Ensuing WWLST occurred in 406 patients; of these, 5 survived to discharge. Of the 123 infants for whom intensive care was continued, 58 (47%) survived to discharge. Survival after WWLST discussion was associated with higher rates of neonatal morbidities and neurodevelopmental impairment compared with babies for whom WWLST discussions did not occur. Significant predictors of ensuing WWLST were maternal age >25 years, necrotizing enterocolitis, and days on a ventilator. CONCLUSIONS: Wide center variations in WWLST discussions occur, especially at ≤24 weeks GA. Outcomes of infants surviving after WWLST discussions are poor. TRIAL REGISTRATION: ClinicalTrials.gov: NCT00063063.

Multiple Perspectives of Symptoms and Suffering at End of Life in the NICU.

BACKGROUND: Despite technological advances in the neonatal intensive care unit, not all infants survive. Limited research has focused on infants' symptoms and suffering at end of life (EOL) from multiple perspectives. PURPOSE: To compare retrospective parent report and electronic medical record (EMR) documentation of symptoms and to examine associations with parent perceptions of infants suffering at EOL. METHODS/SEARCH STRATEGY: Bereaved parents of 40 infants (40 mothers and 27 fathers) retrospectively reported on their perceptions of infant symptoms and suffering during the last week of life. EMRs were also reviewed. FINDINGS/RESULTS: Parents were asked about their observations of 23 symptoms. Within the 27 parental dyads, mothers reported 6.15 symptoms (standard deviation = 3.75), which was not significantly different from fathers' report of 5.67 symptoms (standard deviation = 5.11). Respiratory distress, agitation, and pain were most common according to mothers and EMR, whereas respiratory distress, agitation, and lethargy were most common according to fathers. Few differences were found between mothers, fathers, and EMRs. However, missing data (range: 0%-20%) indicated that some parents had challenges assessing symptoms. Parents reported that the worst symptom was respiratory distress. In addition, parents reported moderate infant suffering, which was correlated with the total number of symptoms. IMPLICATIONS FOR PRACTICE: Parents demonstrate awareness of their infant's symptoms at EOL, and these observations should be valued as they closely parallel EMR documentation. However, some parents did have difficulty reporting symptoms, highlighting the importance of education. IMPLICATIONS FOR RESEARCH: Future larger sample research should prospectively examine parent perceptions of infant symptom burden, suffering, and associations with other infant and parent outcomes (eg, decision making and grief).

Medical record documentation and symptom management at the end of life in the NICU.

PURPOSE: In neonates, the course of illness is often unpredictable and symptom assessment is difficult. This is even truer at the end of life (EOL). Time to death can take minutes to days, and ongoing management of the infant is needed during the time between discontinuation of life-sustaining treatment and death to ensure that the infant remains free of pain and suffering. The symptoms experienced by neonates as they die, as well as best ways to treat those symptoms, are understudied. The purpose of this study was to examine symptoms exhibited by neonates at the EOL and the treatments used to manage those symptoms as documented in the medical record during the last 24 hours of life. SUBJECTS: The sample included 20 neonates who died at a large children's hospital. DESIGN: This was an exploratory, descriptive study. METHODS: Descriptive data, such as diagnosis, ongoing therapy at time of treatment withdrawal or withholding, pharmacologic and nonpharmacologic interventions associated with treatment withdrawal, time of treatment withdrawal and death, age at time of death, signs and symptoms exhibited during EOL care, and pain scores, were abstracted from the infant's medical record. MAIN OUTCOME MEASURES: Inadequate documentation in the medical record resulted in missing data that made it not possible to fully explore aspects of symptom management during the last 24 hours of life; however, some important results were found. RESULTS: This study showed a difference in the way neonates approach the EOL period. Other findings were that most infants in the study received pain medication, even though pain scores were infrequently documented and drug dosages varied across infants. Finally, documentation of nonpharmacologic interventions utilized at the EOL was also lacking.