Patient and provider factors impacting referral for neonatal organ donation.

BACKGROUND: As determination of brain death is infrequent in neonates, the AAP endorses donation after circulatory determination of death as an acceptable alternative. Despite this recommendation, neonatal organ donation is infrequent. Timely referral to OPOs is a vital first step in the organ donation process. The aim of this study was to identify patient and provider factors impacting timely referral for neonatal organ donation. METHODS: Medical records were reviewed for deaths occurring in a Level IV NICU from 2007 to 2017. Clinical and demographic factors, provider type, timing of OPO referral (before or after death), and outcome were assessed. Bivariate and multivariable logistic regression models were utilized to identify predictors of OPO referral characteristics. RESULTS: Between 2007 and 2017, 329 deaths occurred in the NICU or delivery room. Of the 265 infants meeting inclusion criteria, 96% had late referrals (after death) and were declined for organ donation. Frequency of timely referrals (before death) improved when OPO contact was by an attending neonatologist, when withdrawal of life support was planned, and with increasing birthweight, gestational age, and PMA. Factors associated with decreased OPO referral included male sex, lower weight at death, earlier PMA, and deaths occurring while receiving maximal intensive care support. No organs or tissues were donated. CONCLUSIONS: This study is the first to report NICU referral patterns for organ donation. We found that timely provider referral of neonates to the OPO was rare. Exploration of provider knowledge will guide future educational interventions aimed to improve the referral process.

Tummy time without the tears: The impact of parent positioning and play.

The American Academy of Pediatrics (AAP) recommends that infants spend supervised time in the prone (tummy) position to foster motor development and prevent cranial deformities. However, infants may not tolerate the position, and consequently, caregivers may avoid placing their infants in the prone position. The AAP recommends that caregivers provide toys or interaction during tummy time. We evaluated the individual and combined effects of a play mat and experimenter interaction on negative vocalizations and head elevation during tummy time-positive effects were limited. Next, we evaluated a parent-led intervention wherein mothers interacted with their infants, using a toy, while lying chest-to-chest. This intervention was associated with a reduction in negative vocalizations and an increase in head elevation for the majority of infants. Additionally, mothers rated the effectiveness of the parent-led intervention more favorably than the experimenter-led intervention, suggesting the effects of the parent-led intervention were also socially valid.

Evaluation of an Early Language and Literacy Program for Parents of Infants in the NICU.

PURPOSE: To evaluate the effect of a NICU parent education program on parents' early language and literacy practices, and on their confidence interpreting and responding to infant signals. DESIGN: Single group, pre- and post-test, mixed-methods evaluation design. SAMPLE: One hundred and four parents and other caregivers completed questionnaires before and after the one-hour program. Ten parents participated in follow-up interviews. MAIN OUTCOME VARIABLES: Before and after sessions, participants reported on frequency of their current and intended early language and literacy practices, and their confidence interpreting and responding to infant signals. Participants also reported program satisfaction. Interview participants reported their behavior change one to two weeks later. RESULTS: The program significantly increased intention to engage in more early language and literacy practices, and increased parent-reported knowledge of how and when to interact with their infants. The majority of interviewed parents reported engaging in these practices one to two weeks later.

"I don't know what I was expecting": Home visits by neonatology fellows for infants discharged from the NICU.

BACKGROUND: When families transition from the neonatal intensive care unit (NICU) to the home, they become responsible for their infant's daily medical needs. Though neonatology physicians prepare families for hospital discharge, it is unclear how much clinicians understand about how their teaching and instructions translate into home care. The goal of this study was to evaluate the influence of a home visiting program on neonatology fellows' understanding of family needs soon after hospital discharge. METHODS: Neonatology fellows conducted a home visit for an infant recently discharged. Before the visit, fellows reviewed their original discharge instructions, along with information about the family's neighborhood. During the home visit, fellows reviewed their discharge planning with families and discussed any challenges experienced. Afterwards, fellows completed a semi-structured interview; these transcriptions were manually coded for themes. RESULTS: Fellows identified several common women/family discharge challenges. These challenges fall into four domains: (1) inadequate discharge preparation, (2) medicalization of the home, (3) family adjustment to new "normal," and (4) the relevance of social context to discharge planning. Most (90%) fellows reported the home visit experience would affect their future NICU discharge practices and all agreed that home visits should be a part of neonatology training. CONCLUSIONS: Home visits allowed neonatology fellows to examine how their discharge preparation did, or did not, meet the family's needs. Incorporating home visits into neonatology training could help fellows learn about the relevance of social and community factors that are difficult to assess in the inpatient setting.

Perceptions of Palliative Care in the NICU.

BACKGROUND AND PURPOSE: The American Academy of Pediatrics supports palliative care (PC) for all children with life-threatening illnesses. Thus, many neonatal intensive care unit (NICU) patients and their families could benefit from PC. Our study objective was to examine provision of PC as experienced by mothers and healthcare providers (HCPs) of NICU patients with life-threatening illnesses. Palliative care components explored included communication, choices, comfort, psychosocial and spiritual needs, and coordination of care. METHODS: In this qualitative, descriptive study, we conducted semistructured interviews with mothers of infants with life-threatening illnesses and NICU HCPs who cared for these infants. Mothers selected HCPs who were key figures during their infant's NICU stay to participate. Interviews were transcribed and manually coded until themes emerged and theoretical saturation was achieved. Researchers reviewed charts for demographics and notes pertaining to PC. Triangulation of maternal interviews, HCP interviews, and chart notes was performed. RESULTS: Theoretical saturation was achieved after 12 interviews. Mothers identified 5 nurses and 1 physician to be interviewed. Five themes were identified following data analysis and triangulation: (1) communication, (2) privacy, (3) continuity of care and relationship building, (4) maternal knowledge seeking, and (5) emotional turmoil. IMPLICATIONS FOR PRACTICE AND RESEARCH: Of domains of pediatric PC explored, participants emphasized transparent communication, family meetings as a venue for collaboration and shared decision making, the significance of psychosocial support for maternal emotional distress, and the importance of continuity of care across an often long and stressful hospitalization. Although mothers desired privacy, participants valued the security of the open-room NICU design. Future research should address components of PC that predominate in this specialized population.

Early intervention and the role of pediatricians.

Growing evidence supports the efficacious nature of early intervention (EI) services to children with developmental delays and their families. Pediatricians can play a crucial role in identifying developmental delays and referring families to EI services provided by each state, under Part C of the Individuals with Disabilities Education Act (IDEA). The goals of this article are to educate pediatricians about the benefits of EI services and resources available within their state to help facilitate family involvement in EI. By being involved in the EI process, pediatricians can work as partners with parents and multidisciplinary teams to provide seamless coordinated care to children and their families.

Convalescent care of infants in the neonatal intensive care unit in community hospitals: risk or benefit?

OBJECTIVE: To compare very low birth weight (VLBW) infants transported to a community hospital (CH) before discharge with infants who received convalescent care in a regional-referral NICU (RR-NICU) on 4 parameters: health indicators at the time of hospital discharge, health care use during the 4 months after discharge to home, parent satisfaction with hospital care, and cost of hospitalization. PATIENTS AND METHODS: VLBW infants cared for in 2 RR-NICUs during 2004-2006 were enrolled in the study. One RR-NICU transfers infants to a CH for convalescent care and the other discharges infants directly home. Infants were followed prospectively. Information was gathered from medical charts, parent interviews, and hospital business offices. RESULTS: A total of 255 VLBW infants were enrolled in the study, and 148 were transferred to 15 CHs. Nineteen percent of transferred infants were readmitted to a higher level of care before discharge from the hospital. Preventative health measures and screening examinations were more frequently missed, readmission within 2 weeks of discharge from the hospital was more frequent, parents were less satisfied with hospital care, and duration of hospitalization was 12 days longer, although not statistically different, if infants were transferred to a CH for convalescence rather than discharged from the RR-NICU. Total hospital charges did not differ significantly between the groups. CONCLUSION: Transfer of infants to a CH from an RR-NICU for convalescent care has become routine but may place infants at risk. Our study indicates room for improvement by both CHs and RR-NICUs in the care of transferred VLBW infants.

Early intervention best practice: collaboration among an NICU, an early intervention program, and an NICU follow-up program.

Maryland's PRemature Infant Developmental Enrichment (PRIDE) program is a collaborative endeavor between the University of Maryland Medical Systems (UMMS) and the Baltimore Infants and Toddlers Program (BITP). This article discusses the components of Maryland's PRIDE, the program's implications for nursing, and recommendations for replication.