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.

Uncertainty and perinatal post-traumatic stress disorder in the neonatal intensive care unit.

Parents of infants in the neonatal intensive care unit (NICU) are at increased risk of developing perinatal post-traumatic stress disorder (PPTSD), a mental health condition known to interfere with healthy parental and infant attachment. Feelings of uncertainty about illness have been theorized as an antecedent to post-traumatic stress, however the relationship has not been explored in parents of infants requiring care in the NICU. The purpose of this prospective study was to explore parental uncertainty during and after NICU discharge and the relationship between uncertainty and PPTSD. The sample consisted of 319 parents during NICU hospitalization and 245 parents at 3 months postdischarge. Parents who screened positive for PPTSD 3 months after hospital discharge reported more uncertainty both while in the NICU and 3 months after hospital discharge (p < 0.001). In parents with a personal or family history of mental illness, the moderated/mediating structural probit analysis showed no direct or indirect effect of uncertainty during hospitalization or at 3 months after hospital discharge on screening positive for PPTSD. In parents who did not report personal or family history of mental illness, uncertainty at 3 months after hospital discharge had a direct effect (b = 0.678, p < 0.001) and indirect mediating effect (b = 0.276, p < 0.001) on screening positive for PPTSD. The results provide actionable implications for mental health and NICU providers: (1) routine screening for uncertainty and risk factors including previous personal and family history of mental illness, and (2) the development of NICU follow-up support services to mitigate risk for PPTSD.

Actual and Potential Impact of a Home Nasogastric Tube Feeding Program for Infants Whose Neonatal Intensive Care Unit Discharge Is Affected by Delayed Oral Feedings.

OBJECTIVE: To compare healthcare use and parent health-related quality of life (HRQL) in 3 groups of infants whose neonatal intensive care unit (NICU) discharge was delayed by oral feedings. STUDY DESIGN: This was a prospective, single-center cohort of infants in the NICU from September 2018 to March 2020. After enrollment, weekly chart review determined eligibility for home nasogastric (NG) feeds based on predetermined criteria. Actual discharge feeding decisions were at clinical discretion. At 3 months' postdischarge, we compared acute healthcare use and parental HRQL, measured by the PedsQL Family Impact Module, among infants who were NG eligible but discharged with all oral feeds, discharged with NG feeds, and discharged with gastrostomy (G) tubes. We calculated NICU days saved by home NG discharges. RESULTS: Among 180 infants, 80 were orally fed, 35 used NG, and 65 used G tubes. Compared with infants who had NG-tube feedings, infants who had G-tube feedings had more gastrointestinal or tube-related readmissions and emergency encounters (unadjusted OR 3.97, 95% CI 1.3-12.7, P = .02), and orally-fed infants showed no difference in use (unadjusted OR 0.41, 95% CI 0.1-1.7, P = .225). Multivariable adjustment did not change these comparisons. Parent HRQL at 3 months did not differ between groups. Infants discharged home with NG tubes saved 1574 NICU days. CONCLUSIONS: NICU discharge with NG feeds is associated with reduced NICU stay without increased postdischarge healthcare use or decreased parent HRQL, whereas G-tube feeding was associated with increased postdischarge healthcare use.

Identifying barriers and facilitators to care for infants with bronchopulmonary dysplasia after NICU discharge: a prospective study of parents and clinical stakeholders.

OBJECTIVE: Understand barriers and facilitators to follow-up care for infants with bronchopulmonary dysplasia (BPD). METHODS: Qualitative study of parents and clinical stakeholders caring for infants with BPD. The interview guide was developed by a mother of a former 23-week preterm infant, neonatologist, pulmonologist, nurse, and qualitative researcher. Purposive sampling obtained a heterogenous sociodemographic and professional cohort. Subjects discussed their experience with BPD, barriers to care, caregiver quality of life and health education. Interviews were audio-recorded, transcribed and coded. Thematic analysis was used. RESULTS: Eighteen parents and 20 stakeholders completed interviews. Family-level themes included pragmatic barriers like transportation being multi-faceted; and caregiving demands straining mental health. System-level themes included caregiver education needing to balance immediate caregiving activities with future health outcomes; and integrating primary care, specialty, and community supports. CONCLUSIONS: Individual and system barriers impact follow-up for infants with BPD. This conceptual framework can be used to measure and improve care.

Inpatient education reduces length of outpatient oxygen therapy in bronchopulmonary dysplasia: A quality improvement project.

BACKGROUND: Patients discharged on home oxygen therapy (HOT) for bronchopulmonary dysplasia (BPD) often receive months of this therapy. A previous trial comparing two methods of HOT weaning showed that increased parent involvement in HOT weaning decreased HOT duration. Our outpatient team uses a standard protocol for outpatient HOT weaning, starting at the first clinic visit 4-6 weeks after discharge. AIM: To shorten HOT duration by teaching parents the outpatient HOT weaning process before neonatal intensive care unit (NICU) discharge. METHODS: We launched a quality improvement program in April 2021 for preterm infants with BPD without significant comorbidities who were stable on ≤0.5 L nasal cannula. Eligible infants started the outpatient HOT weaning protocol while inpatient, with education for parents and nurses. The outcome measure was the duration of HOT after discharge. Process measures focused on protocol adherence. Balancing measures included NICU length of stay and appropriateness of parent-directed HOT weaning. RESULTS: During the study period, there were a total of 133 eligible patients discharged on home oxygen, with 75 in the baseline group and 58 in the intervention group. Forty-five (78%) participated in the HOT weaning protocol while inpatient. HOT was reduced from an average of 27 to 12 weeks after May 2021. We observed no change in NICU length of stay or inappropriate HOT weaning. CONCLUSION: Early introduction of HOT weaning with a focus on caregiver education is associated with a decreased duration of HOT.

Identifying Barriers and Facilitators to Care for Infants with Bronchopulmonary Dysplasia After NICU Discharge: A Prospective Study of Parents and Clinical Stakeholders.

Objective: Understand barriers and facilitators to follow-up care for infants with bronchopulmonary dysplasia (BPD). Methods: Qualitative study of parents and clinical stakeholders caring for infants with BPD. The interview guide was developed by a mother of a former 23-week preterm infant, neonatologist, pulmonologist, nurse, and qualitative researcher. Purposive sampling obtained a heterogenous sociodemographic and professional cohort. Subjects discussed their experience with BPD, barriers to care, caregiver quality of life and health education. Interviews were audio-recorded, transcribed and coded. Thematic analysis was used. Results: Eighteen parents and 20 stakeholders completed interviews. Family-level themes included pragmatic barriers like transportation being multi-faceted; and caregiving demands straining mental health. System-level themes included caregiver education needing to balance process needs with future trajectories; and integration of primary care, specialty care, and community supports. Conclusions: Individual and system barriers impact follow-up for infants with BPD. This conceptual framework can be used to measure and improve care.

Implementation of a pilot electronic parent support tool in and after neonatal intensive care unit discharge.

OBJECTIVE: To describe an electronic parent support tool for the neonatal intensive care unit (NICU), and to assess whether support requests changed with staff availability. METHODS: We implemented secure text- or email-based parent support in the NICU and in the week after discharge. Questionnaires asked whether a parent would like psychology, social work, child life, chaplain, or post-discharge nurse support. Requested referrals were placed, and customized online resources and contacts were provided. We assessed whether requests changed based on in-person resource availability. RESULTS: Of 378 infants in our NICU from May to December, 202 parents agreed to participate. The proportion agreeing to participate increased over time (38-59%, p = 0.012). Post-discharge nurse requests decreased over time (90-45%, p = 0.033); other requests did not change significantly. CONCLUSIONS: An electronic tool increased parent support availability in the NICU and following discharge, even after staff were available at the bedside.

Newborn behavioral and physiological responses to circumcision.

PURPOSE: To examine the effect of preoperative acetaminophen given as analgesia before circumcision on newborns' behavioral response. STUDY DESIGN AND METHODS: A convenience sample of 53 male newborn infants (GA 35 to 42 weeks) who were.24 hours of age and whose parents had consented to circumcision were enrolled in the study. All of the infants enrolled were the patients of providers who did not routinely use anesthesia for circumcision. They were assigned to two groups based on physician standing order for preoperative acetaminophen. The first group received oral acetaminophen during the preoperative period; the second group received no preoperative analgesia. No further analgesia or anesthesia was given, as was the customary policy. Behavioral observations using the Neonatal Inventory Pain Scale (NIPS) and physiologic monitoring occurred at 5 minutes preoperatively, during application of restraints, at 1-minute intervals intraoperatively and at 5, 15, 30, and 60 minutes postoperatively. RESULTS: There were no differences in the demographic variables between groups. The overall mean NIPS scores for the following characteristics were lower (indicating more relaxation) in newborns who received preoperative analgesia: arm movements (0.27 vs 0.52); leg movements (0.27 vs 0.59); facial expression (0.24 vs 0.27); state of arousal (0.15 vs 0.46); and breathing quality (0.20 vs 0.38). However, newborns who received pre-op analgesia had higher crying scores (0.42 vs 0.33), although both groups had mean crying scores in the lowest range. CLINICAL IMPLICATIONS: Despite its small sample size, this study suggests that preoperative analgesia before circumcision could be helpful in managing the pain of circumcision. Nurses have a responsibility to advocate for policy and practices changes that provide interventions for pain relief for all newborns.

The reproductive life plan as a strategy to decrease poor birth outcomes.

The purpose of this article is to discuss the importance of implementing a life course perspective model that includes a reproductive life plan to improve health outcomes, especially in populations at risk for adverse outcomes. A reproductive life plan is a comprehensive strategy that can be incorporated into nursing practice at all levels to improve birth outcomes. Health care providers, especially nurses, should incorporate reproductive life planning into their daily encounters with patients.

Using Fetal and Infant Mortality Reviews to improve birth outcomes in an urban community.

OBJECTIVE: To describe the implementation of a Fetal and Infant Mortality Review (FIMR) in a small urban community to improve perinatal birth outcomes. DESIGN: Descriptive study. SETTING: Urban community within a Wisconsin city, population 85,000. PARTICIPANTS: Between January 1, 2007 and December 31, 2008, all women (N=82) in a targeted five zip-code area within an urban city were identified who experienced a fetal loss >14 weeks, neonatal or infant death (<1 year of age). METHODS: The National Fetal and Infant Mortality Review Manual: A Guide for Communities developed by the American College of Obstetricians and Gynecologists and the Maternal and Child Health Bureau (2008) provided the framework for the systematic review of available records for all fetal and infant deaths during a 2-year period. Based on these findings, targeted evidence-based interventions were implemented. RESULTS: The infant mortality rate was higher in two of the five targeted zip-code areas. The mean ages of women who experienced fetal and infant mortality were in their 20s as opposed to teenage mothers. A higher proportion of Black women experienced fetal/perinatal losses than other race/ethnicities, many of which were related to prematurity. CONCLUSIONS: Many social, environmental, and maternal health issues such as poverty, racism, and perception of stress negatively contributed to the general health of women's subsequent birth outcomes. Nurses have the opportunity to promote and improve health to eliminate racial disparities in birth outcomes within their communities.