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Background: The observation of color is an integral part of the nursing assessment. However, the current understanding of individual skin qualities and pigmentation has not yet been integrated thoroughly into foundational assessment courses, clinical education, simulation, and textbooks. Evidence Acquisition: Literature is scarce regarding racial groups, skin color, and physical assessment for patients across the lifespan, but even more so for the neonatal population. Historically, many nursing textbooks did not provide visual pictures or observational assessment strategies for the assessment of the Black, Indigenous, and people of color (BIPOC) population. This is improving in some nursing textbooks; however, the descriptors of and visual differences and anticipated assessment findings for the BIPOC population are not comprehensive. Results: Evidence-based assessment findings, which may occur in newborns with varying skin tones/pigmentations, are presented. Implications for Practice and Research: The most essential step to having an accurate assessment is acknowledging the importance of color awareness. Color blindness, while thought to support inclusivity, only contributes to exclusion of one of the most important components of a person's being—their color. [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]

Background and Purpose: Illness severity among children with life-limiting illnesses is measured with the pediatric complex chronic conditions (CCC) measure. Developed in 2000/2001, it was revised in 2014 to include infant-specific categories. Methods: Discrimination, calibration, accuracy, and validation tests were used to examine the predictive performance of the measures. Results: Among the 10,175 infants in the analysis, both measures poorly discriminated—palliative care consultation (C-statistics 0.6396 vs. C-statistics 0.5905) and any inpatient procedure (C-statistics 0.6101 vs. C-statistics 0.5160). The Hosmer–Lemeshow goodness-of-fit tests revealed good calibration for both measures. The original measure was more accurate in predicting end-of-life outcomes—palliative care consultation (Brier Score 0.3892 vs. 0.7787) and any inpatient procedures (Brier Score 0.3115 vs. 0.4738). Conclusions: The revised measure did not perform any better than the original in predicting end-of-life outcomes among infants. [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: 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: 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]

Objectives: Assessment and management of symptoms exhibited by infants can be challenging, especially at the end-of-life, because of immature physiology, non-verbal status, and limited symptoms assessment tools for staff nurses to utilize. This study explored how nurses observed and managed infant symptoms at the end-of-life in a neonatal intensive care unit. Methodology/Design Methods: This was a qualitative, exploratory study utilizing semi-structured face-to-face interviews, which were tape-recorded, transcribed verbatim, and then analyzed using the Framework Approach. Setting: The sample included 14 staff nurses who cared for 20 infants who died at a large children's hospital in the Midwestern United States. Main outcome measures: Nurses had difficulty recalling and identifying infant symptoms. Barriers to symptom identification were discovered based on the nursing tasks associated with the level of care provided. Results: Three core concepts emerged from analyses of the transcripts: Uncertainty, Discomfort, and Chaos. Nurses struggled with difficulties related to infant prognosis, time of transition to end-of-life care, symptom recognition and treatment, lack of knowledge related to various cultural and religious customs, and limited formal end-of-life education. Conclusion: Continued research is needed to improve symptom assessment of infants and increase nurse comfort with the provision of end-of-life care in the neonatal intensive care unit. [ABSTRACT FROM AUTHOR]