Participants reported that a legacy-making intervention via digital storytelling would be feasible, acceptable, and beneficial for NICU parents. Study results support the need and desire for legacy-making services to be developed and offered in the NICU.

IMPORTANCE It remains poorly understood how parents decide whether to enroll a child in a neonatal clinical trial. This is particularly true for parents from racial or ethnic minority populations.Understanding factors associated with enrollment decisions may improve recruitment processes for families, increase enrollment rates, and decrease disparities in research participation. OBJECTIVE To assess differences in parental factors between parents who enrolled their infant and those who declined enrollment for a neonatal randomized clinical trial. DESIGN, SETTING, AND PARTICIPANTSThis survey study conducted from July 2017 to October 2019 in 12 US level 3 and 4 neonatal intensive care units included parents of infants who enrolled in the High-dose Erythropoietin for Asphyxia and Encephalopathy (HEAL) trial or who were eligible but declined enrollment. Data were analyzed October 2019 through July 2020. EXPOSURE Parental choice of enrollment in neonatal clinical trial. MAIN OUTCOMES AND MEASURES Percentages and odds ratios (ORs) of parent participation as categorized by demographic characteristics, self-assessment of child's medical condition, study comprehension, and trust in medical researchers. Survey questions were based on the hypothesis that parents who enrolled their infant in HEAL differ from those who declined enrollment across 4 categories: (1) infant characteristics and parental demographic characteristics, (2) perception of infant's illness, (3) study comprehension, and (4) trust in clinicians and researchers. RESULTSOf a total 387 eligible parents, 269 (69.5%) completed the survey and were included in analysis. This included 183 of 242 (75.6%) of HEAL-enrolled and 86 of 145 (59.3%) of HEAL-declined parents. Parents who enrolled their infant had lower rates of Medicaid participation (74 [41.1%] vs 47 [55.3%]; P = .04) and higher rates of annual income greater than $55 000 (94 [52.8%] vs 30 [37.5%]; P = .03) compared with those who declined. Black parents had lower enrollment rates compared with White parents (OR, 0.35; 95% CI, 0.17-0.73). Parents who reported their infant's medical condition as more serious had higher enrollment rates (OR, 5.7; 95% CI, 2.0-16.3). Parents who enrolled their infant reported higher trust in medical researchers compared with parents who declined (mean [SD] difference, 5.3 [0.3-10.3]). There was no association between study comprehension and enrollment. CONCLUSIONS AND RELEVANCEIn this study, the following factors were associated with neonatal clinical trial enrollment: demographic characteristics (ie, race/ethnicity, Medicaid status, and (continued) Key Points Question How do parents with infants enrolled in a neonatal clinical trial differ from those who decline participation? Findings In this survey study including 269 parent responses, participants who enrolled their infant had different demographic characteristics (lower rate of Medicaid participation, higher income, less likely to identify as Black), reported their infant's medical condition as more serious, and reported ...

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Objective The study aimed to better understand how neonatology and maternal fetal medicine (MFM) physicians convey information during antenatal counseling that requires facilitating shared decision-making with parents facing options of resuscitation versus comfort care after extremely early delivery Study Design Attending physicians at US centers with both Neo and MFM fellowships were invited to answer an original online survey about antenatal counseling for extremely early newborns. The survey assessed information conveyed, processes for facilitating shared decision-making (reported separately), and clinical experiences. Neonatology and MFM responses were compared. Multivariable logistic regression analyzed topics often and seldom discussed by specialty groups with respect to respondents' clinical experience and resuscitation option preferences at different gestational weeks. Results In total, 74 MFM and 167 neonatologists representing 94% of the 81 centers surveyed responded. Grouped by specialty, respondents were similar in counseling experience and distribution of allowing choices between resuscitation and no resuscitation for delivery at specific weeks of gestational ages. MFM versus neonatology reported similar rates of discussing long-term health and developmental concerns and differed in all other categories of topics. Neonatologists were less likely than MFM to discuss caregiver impacts (odds ratio [OR]: 0.14, 95% confidence interval [CI]: 0.11–0.18, p < 0.001) and comfort care details (OR: 0.19, 95% CI: 0.15–0.25, p < 0.001). Conversely, neonatology versus MFM respondents more frequently reported “usually” discussing topics pertaining to parenting in the NICU (OR: 1.5, 95% CI: 1.2–1.8, p < 0.001) and those regarding stabilizing interventions in the delivery room (OR: 1.8, 95% CI: 1.4–2.2, p < 0.001). Compared with less-experienced respondents, those with 17 years’ or more of clinical experience had greater likelihood in both specialties to say they “usually” discussed otherwise infrequently reported topics pertaining to caregiver impacts. Conclusion Parents require information to make difficult decisions for their extremely early newborns. Our findings endorse the value of co-consultation by MFM and neonatology clinicians and of trainee education on antenatal consultation education to support these families. Key Points