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Background: Though prior literature has demonstrated that communication in the Neonatal Intensive Care Unit (NICU) needs to be improved, in-depth descriptions of parents' views of NICU communication are lacking. Purpose: We sought (1) to explore parent perceptions of communication in the NICU and (2) to understand parents' communication needs and preferences. Methods: We conducted in-depth semi-structured cognitive interviews utilizing concurrent probes with parents of 10 patients in our urban level IV Neonatal Intensive Care Unit over a period of 4 months (July 2021-October 2021). Interview questions were derived from the Quality of Communication scale. We conducted thematic analysis of interview transcripts modeled after work by Braun and Clarke. Results: Four overarching themes were identified: Strengths, Challenges, People, and Coping Strategies. Parents reported a range of communication quality in the NICU. Results revealed that the first 48 hours of NICU hospitalization represent a period of vulnerability and uncertainty for parents. Parents value clear yet hopeful communication about a baby's clinical status and expected course. Implications for Practice and Research: We hope that the concrete findings from this study can both inform practice in the NICU now and influence practice guidelines to include such components as emphasis on the first 48 hours, desire for proactive information sharing, and the importance of including hope. [ABSTRACT FROM AUTHOR]

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 (a= 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. [ABSTRACT FROM AUTHOR]

Background: Although end-of-life care (EOLC) has been well-studied, the experience of neonatal intensive care unit (NICU) nurses in China, where little EOLC training is provided, requires further investigation. Purpose: To explore the lived experience of EOLC delivery among NICU nurses, to provide evidence to enhance nurses' EOLC skills and improve their overall quality. Methods: This qualitative study adopted a phenomenological approach. A total of 11 NICU nurses participated in semistructured in-depth interviews between June and July 2022 at the First Affiliated Hospital of University of Science and Technology of China (USTC). Colaizzi's 7-step method was used to analyze the data. Results: Five main themes were identified: (a) multiple emotions are experienced during EOLC delivery; (b) EOLC delivery is stressful from various sources for nurses; (c) expressing empathy and compassion is important; (d) ethical and clinical decision-making are key components of EOLC delivery; and (e) there are challenges in improving neonatal EOLC understanding and delivery. Implications for Practice and Research: The experience of EOLC among Chinese NICU nurses is multidimensional and intensive. Institutions or units must establish and implement related protocols and guidelines to address differences between clinical practice and ideal protocols for neonatal EOLC. Educational programs that consider nurses' personal and interpersonal factors, including local culture, must be developed. Neonatal nurses in Western countries encountering Chinese-born parents who have lost their infants can gain an understanding of parents' perceptions from this study. Future research should focus on developing and testing interventions to train and support NICU nurses working with end-of-life neonates. [ABSTRACT FROM AUTHOR]

Objectives: We hoped to understand (1) how parents of seriously ill neonatal intensive care unit patients conceptualize neonatal serious illness, and (2) how parent and physician perspectives on neonatal serious illness might differ. Design: This was a prospective survey study. Setting/Subjects: Parent members of the Courageous Parents Network. Measurements: We circulated a modified version of a previously developed survey. Participants were presented with a list of potential definition components and asked to rank components by importance and suggest modifications to the definition as needed. Thematic analysis of free-text responses was conducted to identify key themes in parent responses Results: Eighty-eight percent of parent participants agreed or strongly agreed with our working definition of neonatal serious illness. Parents agreed with the content of the definition but suggested using different language (especially less jargon) when using the definition to inform conversations with parents. Conclusions: The majority of parents surveyed for this study supported our definition of neonatal serious illness, which suggests that it may be useful for clinical and research applications. At the same time, parent responses revealed important differences in perceptions about serious illness between parents and physicians. In addition, parents will likely use any definition of neonatal serious illness differently than clinicians. We therefore propose that our definition be used to identify neonates with serious illness for the purposes of research and clinical care, but should not be used verbatim for communication with parents. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objectives: About 16,000 infants die in the neonatal intensive care unit (NICU) each year with many experiencing invasive medical treatments and high number of symptoms.1 To inform better management, we characterized diagnoses, symptoms, and patterns of care among infants who died in the NICU. Method: Retrospective electronic medical record (EMR) review of 476 infants who died following admission to a large regional level IV NICU in the United States over a 10-year period. Demographic, symptom, diagnosis, treatment, and end-of-life characteristics were extracted. Results: About half of infants were male (55.9%, n = 266), average gestational age was 31.3 weeks (standard deviation [SD] = 6.5), and average age at death was 40.1 days (SD = 84.5; median = 12; range: 0–835). Race was documented for 65% of infants, and most were White (67.0%). One-third of infants (n = 138) were seen by fetal medicine. Most infants experienced pain through both the month and week before death (79.6%), however, infants with necrotizing enterocolitis had more symptoms in the week before death. Based on EMR, infants had more symptoms, and received more medical interventions and comfort measures during the week before death compared with the month prior. Only 35% (n = 166) received a palliative care referral. Conclusions: Although the medical profiles of infants who die in the NICU are complex, the overall number of symptoms was less than in older pediatric populations. For infants at high risk of mortality rate, providers should assess for common symptoms over time. To manage symptoms as effectively as possible, both timely and continuous communication with parents and early referral to palliative care are recommended. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Respiratory distress is one of the most commonly reported symptoms in infants in the neonatal intensive care unit and can lead to substantial morbidity and mortality if not assessed and managed appropriately. Yet, a validated scale for assessing respiratory distress across clinicians in infants is not available. Furthermore, a valid and reliable scale is needed as a dependent measure in studies about infant respiratory distress. Objective: The purpose of this study was to establish a content validity index (CVI) of a modification of the Respiratory Distress Observation Scale© (RDOS) for use with infants who are at least 37 weeks gestational age. Design: The RDOS© was revised using the respiratory characteristics of infants and offered to clinical experts for review. Setting/Subjects: A pool of nine experts in neonatal care, including two neonatologists, two nurse practitioners, one respiratory therapist, two staff nurses, and two nurse scientists, evaluated the revised scale for content validity. Results: The scale CVI was calculated by averaging the item CVIs that were ≥0.80 yielding a scale CVI = 0.96. Our content experts further recommended adding the variable capillary perfusion. Conclusions: Content validity was established. This RDOS-Infant has clinical and research utility if subsequent psychometric testing yields additional acceptable reliability and validity statistics. [ABSTRACT FROM AUTHOR]

Context: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering.Objectives: To examine bereaved parents' perceptions of infant suffering in the NICU.Methods: Parents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death.Results: Four themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making.Conclusion: Parents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant. [ABSTRACT FROM AUTHOR]

Background: Neonatal intensive care unit (NICU) nurses require knowledge and skill to meet the unique needs of infants and families. Increasingly, principles of palliative care are being integrated into the NICU setting to improve the quality of care.Purpose: The purpose of this article is to describe the efforts of the End-of-Life Nursing Education Consortium (ELNEC) project and its Pediatric Curriculum, which began in 2003 to provide this education, and to also describe efforts by nurses to implement the training into their practice settings.Methods: The ELNEC Pediatric Palliative Care (ELNEC-PPC) project is a train-the-trainer educational program and evidence-based curriculum.Findings/results: Participants attend a course or receive online training and then apply the education to implement improved practices in areas such as symptom management, care at the time of death, and bereavement support for families.Implications For Research: Experiences with ELNEC-PPC have demonstrated that nurses can implement the curriculum to improve care.Implications For Practice: Continued attention to palliative care in this setting is needed, and future research is needed to evaluate the outcomes of this education and practice change. [ABSTRACT FROM AUTHOR]

Background: Palliative care is becoming an important component for infants with life-limiting or life-threatening conditions and their families. Yet palliative care practices appear to be inconsistent and sporadically used for infants.Purpose: The purpose of this study was to describe the use of an established pediatric palliative care team for seriously ill infants in a metropolitan hospital.Methods: This was a retrospective medical record review.Findings: The population included 64 infants who were admitted to a level IV neonatal intensive care unit (NICU) and then died during hospitalization between January 2015 and December 2016. Most infants died in an ICU (n = 63, 95%), and only 20 infants (31%) received palliative care consultation. Most common reasons for consultation were care coordination, defining goals of care and end-of-life planning, and symptom management.Implications For Practice: Palliative care consultation at this institution did not change the course of end-of-life care. Interventions provided by the ICU team to infants surrounding end of life were similar to those in infants receiving palliative care services from the specialists. Our findings may be useful for developing guidelines regarding how to best utilize palliative care services for infants with life-threatening conditions who are admitted to an ICU.Implications For Research: These finding support continued research in neonatal palliative care, more specifically the impact of palliative care guidelines and algorithms. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: Palliative care (PC) in the neonatal intensive care unit (NICU) is often provided exclusively to infants expected to die. Standards of care support providing PC early after diagnosis with any condition likely to impact quality of life.Purpose: To determine the state of early PC practice across populations to derive elements of early PC applicable to neonates and their families and demonstrate their application in practice.Search Strategy: Multiple literature searches were conducted from 2016 to 2019. Common keywords used were: palliative care; early PC; end of life, neonate; NICU; perinatal PC; pediatric PC; family-centered care; advanced care planning; palliative care consultant; and shared decision-making.Findings: Early PC is an emerging practice in adult, pediatric, and perinatal populations that has been shown to be helpful for and recommended by families. Three key elements of early PC in the NICU are shared decision-making, care planning, and coping with distress. A hypothetical case of a 24-week infant is presented to illustrate how findings may be applied. Evidence supports expansion of neonatal PC to include infants and families without terminal diagnoses and initiation earlier in care.Implications For Practice: Involving parents more fully in care planning activities and decision-making and providing structured support for them to cope with distress despite their child's prognosis are essential to early PC.Implications For Research: As early PC is incorporated into practice, strategies should be evaluated for feasibility and efficacy to improve parental and neonatal outcomes. Researchers should consider engaging NICU parent stakeholders in leading early PC program development and research. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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). [ABSTRACT FROM AUTHOR]

An introduction is presented in which the guest editors discuss the theme of the issue, understanding and intervening to improve outcomes of infants and children born with chronic, complex health conditions.