Effect of Fathers in Preemie Prep for Parents (P3) Program on Couple's Preterm Birth Preparedness.

Objective: Evaluate the effect of fathers' participation in the Preemie Prep for Parents (P3) program on maternal learning and fathers' preterm birth knowledge. Methods: Mothers with preterm birth predisposing medical condition(s) enrolled with or without the baby's father and were randomized to the P3 intervention (text-messages linking to animated videos) or control (patient education webpages). Parent Prematurity Knowledge Questionnaire assessed knowledge, including unmarried fathers' legal neonatal decision-making ability. Results: 104 mothers reported living with the baby's father; 50 participated with the father and 54 participated alone. In the P3 group, mothers participating with the father (n=33) had greater knowledge than mothers participating alone (n=21), 85% correct responses vs. 76%, p =0.033. However, there was no difference in knowledge among the control mothers, 67% vs. 60%, p =0.068. P3 fathers (n=33) knowledge scores were not different than control fathers (n=17), 77% vs. 68%, p =0.054. Parents who viewed the video on fathers' rights (n=58) were more likely than those who did not (n=96) to know unmarried fathers' legal inability to decide neonatal treatments, 84% vs. 41%, p <0.001. Conclusions: Among opposite-sex cohabitating couples, fathers' participation in the P3 program enhanced maternal learning. Practice Implications: The P3 program's potential to educate fathers may benefit high-risk pregnancies.

Black Women and the Preemie Prep for Parents (P3) Program: Exploratory Analysis of a Clinical Trial.

Background: The smartphone Preemie Prep for Parents (P3) program was developed to address the gap in prenatal education of preterm birth in high-risk pregnancies. Despite a higher incidence of preterm birth, Black women are less likely to receive prenatal education. Methods: Pregnant women with medical conditions that predisposed them to preterm birth were randomized to receive the P3 program or links to American College of Obstetricians and Gynecologists webpages (control). The P3 group received periodic text messages, starting as early as 18 weeks gestational age, each with a link to a short, animated educational video. Participants completed the Parent Prematurity Knowledge Questionnaire, PROMIS Anxiety scale, and a feedback survey. This is a subgroup analysis of the Black, non-Hispanic participants in the P3 trial. Results: Of the 26 Black non-Hispanic women enrolled, the P3 group (n=14) had higher knowledge scores than the control group (n=12), 67.5% correct vs. 43.6% (difference 24.0; 95% CI, 7.4 to 40.6), without experiencing an increase in anxiety. More P3 participants reported discussing preterm birth with their partner (100%) than control participants (57%; difference 43; 95% CI, 6 to 80). Conclusions: The P3 program appears to be an effective method of providing preterm birth education to Black pregnant women.

Variability of Care Practices for Extremely Early Deliveries.

OBJECTIVES: Assess temporal changes, intercenter variability, and birthing person (BP) factors relating to interventions for extremely early deliveries. METHODS: Retrospective study of BPs and newborns delivered from 22-24 completed weeks at 13 US centers from 2011-2020. Rates of neonatology consultation, antenatal corticosteroids, cesarean delivery, live birth, attempted resuscitation (AR), and survival were assessed by epoch, center, and gestational age. RESULTS: 2028 BPs delivering 2327 newborns were included. Rates increased in epoch 2-at 22 weeks: neonatology consultation (37.6 vs 64.3%, P < .001), corticosteroids (11.4 vs 29.5%, P < .001), live birth (66.2 vs 78.6%, P < .001), AR (20.1 vs 36.9%, P < .001), overall survival (3.0 vs 8.9%, P = .005); and at 23 weeks: neonatology consultation (73.0 vs 80.5%, P = .02), corticosteroids (63.7 vs 83.7%, P < .001), cesarean delivery (28.0 vs 44.7%, P < .001), live birth (88.1 vs 95.1%, P < .001), AR (67.7 vs 85.2%, P < .001), survival (28.8 vs 41.6%, P < .001). Over time, intercenter variability increased at 22 weeks for corticosteroids (interquartile range 18.0 vs 42.0, P = .014) and decreased at 23 for neonatology consultation (interquartile range 23.0 vs 5.2, P = .045). In BP-level multivariate analysis, AR was associated with increasing gestational age and birth weight, Black BP race, previous premature delivery, and delivery center. CONCLUSIONS: Intervention rates for extremely early newborns increased and intercenter variability changed over time. In BP-level analysis, factors significantly associated with AR included Black BP race, previous premature delivery, and center.

The logistics of withdrawing life-sustaining medical treatment in the neonatal intensive care unit.

Withdrawal of life sustaining medical treatments is a common mode of death in the neonatal intensive care unit. Shared decision making and communication are crucial steps prior to, during and after a withdrawal of life sustaining medical treatments. Discussion should include the steps to occur during the withdrawal. Physicians should recommend appropriate withdrawal steps based on family goals. Stepwise approach should be taken only if a family requests. Care should continue for the family and staff after the withdrawal and the infant's death.

Smartphone-Based Video Antenatal Preterm Birth Education: The Preemie Prep for Parents Randomized Clinical Trial.

Importance: Preterm birth is a leading cause of infant mortality and child morbidity. Preterm birth is not always unexpected, yet standard prenatal care does not offer anticipatory education to parents at risk of delivering preterm, which leaves parents unprepared to make health care choices during the pregnancy that can improve survival and decrease morbidity in case of preterm birth. Objective: To evaluate the effect of the Preemie Prep for Parents (P3) program on maternal knowledge of preterm birth, preparation for decision-making, and anxiety. Design, Setting, and Participants: Recruitment for this randomized clinical trial conducted at a US academic medical center took place from February 3, 2020, to April 12, 2021. A total of 120 pregnant persons with a risk factor for preterm birth were enrolled between 16 and 21 weeks' gestational age and followed up through pregnancy completion. Intervention: Starting at 18 weeks' gestational age, P3 program participants received links delivered via text message to 51 gestational age-specific short animated videos. Control participants received links to patient education webpages from the American College of Obstetricians and Gynecologists. Main Outcomes and Measures: At 25 weeks' gestation, scores on the Parent Prematurity Knowledge Questionnaire (scored as percent correct), Preparation for Decision Making Scale (scored 0-100), and Patient-Reported Outcomes Measurement Information System (PROMIS) Anxiety computerized adaptive test. Analysis was based on an intention to treat. Results: A total of 120 pregnant participants (mean [SD] age, 32.5 [4.9] years) were included in the study; 60 participants were randomized to each group. Participants in the P3 group scored higher than those in the control group on knowledge of long-term outcomes at 25 weeks (88.5% vs 73.2%; estimated difference, 15.3 percentage points; 95% CI, 8.3-22.5 percentage points; P < .001). Participants in the P3 group reported being significantly more prepared than did participants in the control group for neonatal resuscitation decision-making at 25 weeks (Preparation for Decision Making Scale score, 76.0 vs 52.3; difference, 23.7; 95% CI, 14.1-33.2). There was no difference between the P3 group and the control group in anxiety at 25 weeks (mean [SE] PROMIS Anxiety scores, 53.8 [1.1] vs 54.0 [1.1]; difference, -0.1; 95% CI, -3.2 to 2.9). Conclusions and Relevance: In this randomized clinical trial, pregnant persons randomly assigned to the P3 program had more knowledge of core competencies and were more prepared to make decisions that affect maternal and infant health, without experiencing worse anxiety. Mobile antenatal preterm birth education may provide a unique benefit to parents with preterm birth risk factors. Trial Registration: ClinicalTrials.gov Identifier: NCT04093492.

Role of palliative care in centers performing maternal-fetal interventions.

Advancements in maternal-fetal interventions have allowed for direct fetal access, shifting the focus of interventions from maternal health for fetal health to a focus on sole fetal/neonatal benefit. Given that access to the fetus can only be obtained through the mother, there are ethical considerations important to consider when counseling the maternal-fetal dyad. The goals of maternal-fetal interventions range from improved fetal/neonatal survival to decreased long-term morbidities and improved quality of life. However, interventions to improve quality of life may not always achieve their desired result. Additionally, maternal-fetal interventions have risks such as premature birth and other complications that should be heavily considered as they may offset the potential benefits of the procedure. While some families elect for a maternal-fetal intervention, doing every potential postnatal intervention may not be in alignment with their goals depending on the outcome of the intervention. Given the complex, value-laden decision-making that is crucial to counseling parents about decisions surrounding maternal-fetal interventions and subsequent neonatal care, palliative care specialists should be utilized in fetal centers. Palliative care specialists are trained to assist with complex, goal concordant decision-making and can guide families and medical teams through the decision points that arise during the treatment journey.

Bioethics for Neonatal Cardiac Care.

BACKGROUND: Clinicians caring for neonates with congenital heart disease encounter challenges with ethical implications in daily practice and must have some basic fluency in ethical principles and practical applications. METHODS: Good ethical practice begins with a thorough understanding of the details and narrative of each individual case, examination via classic principles of bioethics, and further framing of that translation into practice. RESULTS: We explore some of these issues and expand awareness through the lens of a case presentation beginning with fetal considerations through end-of-life discussions. CONCLUSIONS: We include specific sections that bring attention to shared decision-making, research ethics, and outcomes reporting. We review empirical evidence and highlight recommendations.

A Venn diagram of vulnerability: The convergence of pediatric palliative care and child maltreatment a narrative review, and a focus on communication.

Child maltreatment and end-of-life care independently represent two of the most emotion-laden and uncomfortable aspects of pediatric patient care. Their overlap can be uniquely distressing. This review explores ethical and legal principles in such cases and provides practical advice for clinicians. The review focuses on three archetypal scenarios of overlap: life-limiting illness in a child for whom parental rights have been terminated; life-threatening injury under CPS investigation; and complex end-of-life care which may warrant CPS involvement. While each scenario presents unique challenges, one consistent theme is the centrality of effective communication. This includes empathic communication with families and thoughtful communication with providers and community stakeholders. In almost all cases, everyone genuinely wants to do what is in the best interest of the child in these unthinkable circumstances. Transparent and collaborative communication can ensure that broad perspectives are considered to ensure that each child gets the best possible care in a manner adherent with ethical and legal standards, as they apply to each case.

Parent Health-Related Quality of Life for Infants with Congenital Anomalies Receiving Neonatal Intensive Care.

OBJECTIVE: To examine factors associated with parent quality of life during and after neonatal intensive care unit (NICU) discharge among parents of infants with congenital anomalies admitted to the NICU. STUDY DESIGN: This secondary analysis of 2 prospective cohort studies between 2016 and 2020 at a level IV NICU included parents of infants with major congenital anomalies receiving NICU care. The primary outcomes were parent health-related quality of life (HRQL) during the NICU stay and at 3 months post-NICU discharge. RESULTS: A total of 166 parent-infant dyads were enrolled in the study, 124 of which completed the 3-month follow-up interview. During the NICU stay, parent history of a mental health disorder (-13 points), earlier gestational age (-17 points), consultation by multiple specialists (-11 points), and longer hospital stay (-5 points) were associated with lower HRQL. Parents of infants with a neonatal surgical anomaly had higher HRQL (+4 points). At 3 months after NICU discharge, parent receipt of a psychology consult in the NICU, the total number of consultants involved in the child's care, and an infant with a nonsurgical anomaly were associated with lower parent HRQL. Parents of infants with a gastrostomy tube (-6 points) and those with hospital readmission (-5 points) had lower HRQL. Comparing same-parent differences in HRQL over time, parents of infants with anomalies did not show significant improvement in HRQL on discharge home. CONCLUSION: Parents of infants with congenital anomalies reported low HRQL at baseline and at discharge. Parents of infants with nonsurgical, medically complex anomalies requiring multispecialty care represent a vulnerable group who could be better supported during and after their NICU stay.