Communicating with Parents About Therapeutic Hypothermia and Hypoxic Ischemic Encephalopathy: Integrating a Palliative Care Approach into Practice.

Parents of newborns with hypoxic ischemic encephalopathy (HIE) can face communication challenges in the neonatal intensive care unit. Both specialty palliative care and primary palliative care trained clinicians can assist parents as they navigate traumatic experiences and uncertain prognoses. Using evidence-based frameworks, the authors provide samples of how to communicate with parents and promote parent well-being across the care trajectory. The authors demonstrate how to involve parents in a shared decision-making process and give special consideration to the complexities of hospital discharge and the transition home. Sustained investment to guide the development of effective communication skills is crucial to support families of infants with HIE.

Clinician Stakeholder Experience With Telemedicine Consults to Assess Neonatal Encephalopathy in a Rural State.

BACKGROUND: Serial neonatal encephalopathy (NE) examinations are difficult to perform in rural community hospitals as on-site experts are not readily available. We implemented a synchronous, acute care model of teleconsultation-the Maine Neonatal Encephalopathy Teleconsultation program (Maine NET)-to provide remote, joint assessment of NE by pediatric neurology and neonatology at nine community hospitals and one tertiary care center. We performed a qualitative study to interview clinicians about their experience of this program. METHODS: From April 2018 to October 2022, we employed a semistructured interview format with 16 clinicians representing all participating hospitals. We utilized deductive analysis to assign a set of predefined codes to the transcribed interviews. RESULTS: Thematic analysis supported the anticipated benefits of Maine NET, demonstrating that clinicians felt resource utilization, collaborative decision making, communication, and continuity of care were improved. Clinicians overwhelmingly supported the program: "This program has truly saved babies' lives and future function. I have not met any parents through this journey, who aren't incredibly grateful for the care that is provided" and emphasized the benefit of collaboration between all care team members. Teleconsultation was felt to be "more than adequate to [assess] NE." Connectivity issues were cited as a limitation. CONCLUSIONS: Maine NET has positively impacted care delivery for newborns with clinical concerns for NE. Additionally, the program has improved resource allocation, collaborative decision making, communication, and equity of care. Addressing technological challenges will be vital to the success and sustainability of the planned Maine NET expansion.

Morbidity Associated with Deviation from Pediatric Status Epilepticus Guidelines.

Treatment guidelines for the management of pediatric status epilepticus (PSE) are often institution-specific. We aim to characterize deviation from our hospital-based PSE treatment guidelines, the total dosage of benzodiazepines administered, and the need for intubation. The study population included all patients with an ICD -10 code for PSE who required admission to the Pediatric Intensive Care Unit (PICU) from April 2019 to April 2022. There were 66 PICU admissions. All patients with concern for PSE and altered mental status are admitted to the PICU. The cohort was divided between those treated according to the PSE protocol (benzodiazepine dose (0.05 mg/kg- 0.2 mg/kg) versus those who had low dose (≤0.05 mg/kg) and high-dose benzodiazepine (> 0.2 mg/kg) totals. The dosage was calculated as the total dose of benzodiazepines received pre-hospital and in the ED before intubation or transport. Forty-one (62 %) of patients received high-dose benzodiazepines (median 0.34 mg/kg [IQR 0.29-0.56], 19 (29 %) received recommended-dose benzodiazepines (median 0.13 mg/kg [IQR 0.09,0.15] and 6 (9 %) received low-dose (median 0.05 mg/kg [IQR 0.03,0.05]. The high-dose group was 15.9 (95 % CI = 3.7, 99.9) times more likely to be intubated controlling for the location of care (tertiary versus community hospital), and the age of the patient. The recommended-dose and low-dose groups required intubation with much less frequency.

Pediatric Trauma and Posttraumatic Symptom Screening at Well-child Visits.

Adverse childhood experiences (ACEs), including abuse or neglect, parental substance abuse, mental illness, or separation, are public health crises that require identification and response. We aimed to increase annual rates of trauma screening during well-child visits from 0% to 70%, post-traumatic stress disorder (PTSD) symptom screening for children with identified trauma from 0% to 30%, and connection to behavioral health for children with symptoms from 0% to 60%. Methods: Our interdisciplinary behavioral and medical health team implemented 3 plan-do-study-act cycles to improve screening and response to pediatric traumatic experiences. Automated reports and chart reviews measured progress toward goals as we changed screening methods and provider training. Results: During plan-do-study-act cycle 1, a chart review of patients with positive trauma screenings identified various trauma types. During cycle 2, a comparison of screening methods demonstrated that written screening identified trauma among more children than verbal screening (8.3% versus 1.7%). During cycle 3, practices completed trauma screenings at 25,287 (89.8%) well-child visits. Among screenings, 2,441 (9.7%) identified trauma. The abbreviated Post Traumatic Stress Disorder Reaction Index was conducted at 907 (37.2%) encounters and identified 520 children (57.3%) with PTSD symptoms. Among a sample of 250, 26.4% were referred to behavioral health, 43.2% were already connected, and 30.4% had no connection. Conclusions: It is feasible to screen and respond to trauma during well-child visits. Screening method and training implementation changes can improve screening and response to pediatric trauma and PTSD. Further work is needed to increase rates of PTSD symptomology screening and connection to behavioral health.

Comprehensive quantitative analyses of fetal magnetic resonance imaging in isolated cerebral ventriculomegaly.

Isolated cerebral ventriculomegaly (IVM) is the most common prenatally diagnosed brain anomaly occurs in 0.2-1 % of pregnancies. However, knowledge of fetal brain development in IVM is limited. There is no prenatal predictor for IVM to estimate individual risk of neurodevelopmental disability occurs in 10 % of children. To characterize brain development in fetuses with IVM and delineate their individual neuroanatomical variances, we performed comprehensive post-acquisition quantitative analysis of fetal magnetic resonance imaging (MRI). In volumetric analysis, brain MRI of fetuses with IVM (n = 20, 27.0 ± 4.6 weeks of gestation, mean ± SD) had revealed significantly increased volume in the whole brain, cortical plate, subcortical parenchyma, and cerebrum compared to the typically developing fetuses (controls, n = 28, 26.3 ± 5.0). In the cerebral sulcal developmental pattern analysis, fetuses with IVM had altered sulcal positional (both hemispheres) development and combined features of sulcal positional, depth, basin area, in both hemispheres compared to the controls. When comparing distribution of similarity index of individual fetuses, IVM group had shifted toward to lower values compared to the control. About 30 % of fetuses with IVM had no overlap with the distribution of control fetuses. This proof-of-concept study shows that quantitative analysis of fetal MRI can detect emerging subtle neuroanatomical abnormalities in fetuses with IVM and their individual variations.

Telemedicine Improves Rate of Successful First Visit to NICU Follow-up Clinic.

OBJECTIVES: NICU graduates require ongoing surveillance in follow-up clinics because of the risk of lower cognitive, motor, and academic performance. We hypothesized that multiple programmatic changes, including availability of telemedicine consultation before hospital discharge, would improve NICU follow-up clinic attendance rates. METHODS: In this retrospective study, we included infants who survived and were premature (≤29 6/7 weeks/<1500 g) or had brain injury (grade III/IV intraventricular hemorrhage, stroke or seizure, hypoxic ischemic encephalopathy). We compared rates of follow-up for the early cohort (January 2018-June 2019; no telemedicine) with the late cohort (May 2020-May 2021; telemedicine available); and performed a mediation analysis to assess other programmatic changes for the late cohort including improved documentation to parents and primary care provider regarding NICU follow-up. RESULTS: The rate of successful 12-month follow-up improved from 26% (early cohort) to 61% (late cohort) (P < .001). After controlling for maternal insurance, the odds of attending a 12-month follow-up visit were 3.7 times higher for infants in the late cohort, for whom telemedicine was available (confidence interval, 1.8-7.9). Approximately 37% of this effect was mediated by including information for NICU follow-up in the discharge documentation for parents (P < .001). CONCLUSIONS: Telemedicine consultation before NICU discharge, in addition to improving communication regarding the timing and importance of NICU follow-up, was effective at improving the rate of attendance to NICU follow-up clinics.

Association of medication-assisted treatment and short acting opioids with newborn head circumference and birth weight.

OBJECTIVE: We compared the association of methadone, buprenorphine, and short-acting opioid exposure with newborn head circumference (HC) and birth weight (BW), and evaluated gestational age (GA) as a mediator. STUDY DESIGN: We included newborns born 2013-2018 identified by neonatal abstinence syndrome diagnosis code (N = 572) and birthday-matched unexposed controls (N = 571). Linear regressions of opioid exposure with HC and BW controlled for tobacco, marijuana, cocaine, gabapentin, cesarean section, Medicaid, and newborn sex, with mediation analysis by GA. RESULT: Methadone was associated with 0.81 cm lower HC (95% CI = -1.22, -0.40) and 0.23 kg lower BW (95% CI = -0.35, -0.10) with approximately 24% and 41% mediated by GA, respectively. Buprenorphine and short acting opioids were not associated with HC or BW. CONCLUSION: Methadone exposed newborns have smaller HC and lower BW not fully attributable to younger GA, suggesting a direct effect of methadone on intrauterine growth. Exploration of potential developmental consequences of this is urgently needed.

Telemedicine Consultation to Assess Neonatal Encephalopathy in Rural Community Hospitals and Tertiary Care Centers.

Introduction: Teleconsultation is used in tertiary care hospitals to evaluate neonatal encephalopathy. Neonates born in community hospitals, however, often experience delayed evaluation due to transport to the tertiary care center. We studied teleconsultations in community hospitals to decrease this disparity. Methods: Prospective observational study in 9 community hospitals and 1 neonatal intensive care unit. Inclusion criteria: gestational age greater than or equal to 35 weeks and one of the following: umbilical cord pH less than or equal to 7.2, 5-minute Apgar less than 7, prolonged respiratory support, perinatal event, or abnormal neurological exam. We performed synchronized, unscheduled telemedicine consults with the main outcome of time to teleconsultation. Results: From April 2018 to September 2020, we performed 53 teleconsultations: 34 (64%) in community hospitals and 19 (36%) in the tertiary care center. Teleconsultations occurred at a median of 98 minutes (IQR, 76-127) in community hospitals versus 68 minutes (IQR, 43-91) in the tertiary care center (p = .004). Nine (26%) neonates born in a community hospital remained with their parents and were not transferred to the tertiary care center for further assessment. Discussion: Neonates born in rural community hospitals have slightly later teleconsultations than neonates born in the tertiary care center. Telemedicine use reduced this disparity from nearly 5 hours in our prior study to 98 minutes in this study by permitting evaluation of neonates in community hospitals without transporting them to the tertiary care center. Conclusions: Teleconsultations to evaluate neonatal encephalopathy are a feasible, accessible, and reliable way to bring expert-level care into rural community hospitals.

Simulation-Based Outreach Program Improves Rural Hospitals' Team Confidence in Neonatal Resuscitation.

INTRODUCTION: Neonatal resuscitation is a high acuity, low occurrence event (HALO), and in rural community hospitals, low birth rates prevent providers from regular opportunities to maintain essential resuscitation skills. Simulation is an effective training modality for medical education, although resources for simulation are often limited in rural hospitals. Our primary objective was to test the hypothesis that in situ neonatal resuscitation simulation training improves rural hospitals' delivery room team confidence in performing key Neonatal Resuscitation Program® (NRP®) skills. Our secondary objective was to compare confidence to performance as measured by adherence to NRP® guidelines. METHODS: We conducted a quasi-experimental pre-training survey and post-training survey of delivery room team confidence in NRP® skills at five level one delivery hospitals before and after an in situ simulation training program. Participants included rural hospitals' usual delivery room team members. Participants rated their confidence on a five-point Likert scale. Simulations were analyzed using an adapted version of a validated scoring tool for NRP® adherence and presented as overall percentage scores. RESULTS: Our data demonstrate a significant improvement in self-assessed confidence levels pre- and post-simulation training in key areas of neonatal resuscitation. Participants reported higher confidence in airway management (4 vs. 3, p=0.003), emergency intravenous access (3 vs. 2, p=0.007), and the ability to manage a code in the delivery room (4 vs. 3, p=0.013) and the operating room (4 vs. 3, p=0.028). Improvements were also noted in their team member's knowledge and skills to perform neonatal resuscitation. While improvements were appreciated in confidence, the performance of skills (NRP® adherence scores) was often in the sub-optimal performance range. CONCLUSIONS: An in situ-based neonatal resuscitation outreach simulation program improves self-confidence among rural delivery room teams. Additional research is needed to understand how to translate improved confidence into actual improved performance.

Regional brain development in fetuses with Dandy-Walker malformation: A volumetric fetal brain magnetic resonance imaging study.

Dandy-Walker malformation (DWM) is a common prenatally diagnosed cerebellar malformation, characterized by cystic dilatation of the fourth ventricle, upward rotation of the hypoplastic vermis, and posterior fossa enlargement with torcular elevation. DWM is associated with a broad spectrum of neurodevelopmental abnormalities such as cognitive, motor, and behavioral impairments, which cannot be explained solely by cerebellar malformations. Notably, the pathogenesis of these symptoms remains poorly understood. This study investigated whether fetal structural developmental abnormalities in DWM extended beyond the posterior fossa to the cerebrum even in fetuses without apparent cerebral anomalies. Post-acquisition volumetric fetal magnetic resonance imaging (MRI) analysis was performed in 12 fetuses with DWM and 14 control fetuses. Growth trajectories of the volumes of the cortical plate, subcortical parenchyma, cerebellar hemispheres, and vermis between 18 and 33 weeks of gestation were compared. The median (interquartile range) gestational ages at the time of MRI were 22.4 (19.4-24.0) and 23.9 (20.6-29.2) weeks in the DWM and control groups, respectively (p = 0.269). Eight of the 12 fetuses with DWM presented with associated cerebral anomalies, including hydrocephalus (n = 3), cerebral ventriculomegaly (n = 3), and complete (n = 2) and partial (n = 2) agenesis of the corpus callosum (ACC); 7 presented with extracerebral abnormalities. Chromosomal abnormalities were detected by microarray analysis in 4 of 11 fetuses with DWM, using amniocentesis. Volumetric analysis revealed that the cortical plate was significantly larger in fetuses with DWM than in controls (p = 0.040). Even without ACC, the subcortical parenchyma, whole cerebrum, cerebellar hemispheres, and whole brain were significantly larger in fetuses with DWM (n = 8) than in controls (p = 0.004, 0.025, 0.033, and 0.026, respectively). In conclusion, volumetric fetal MRI analysis demonstrated that the development of DWM extends throughout the brain during the fetal period, even without apparent cerebral anomalies.

Parent Experience of Hypoxic-Ischemic Encephalopathy and Hypothermia: A Call for Trauma Informed Care.

OBJECTIVE: Therapeutic hypothermia (TH) is the standard treatment for hypoxic-ischemic encephalopathy (HIE). We surveyed parents of infants treated with TH about their experiences of communication and parental involvement in the neonatal intensive care unit (NICU). STUDY DESIGN: A 29-question anonymous survey was posted on a parent support (web site: https://www.hopeforhie.org ) and sent to members via e-mail. Responses from open-ended questions were analyzed using thematic analysis. RESULTS: A total of 165 respondents completed the survey and 108 (66%) infants were treated with TH. 79 (48%) respondents were dissatisfied/neutral regarding the quality of communication in the NICU, whereas 127 (77%) were satisfied/greatly satisfied with the quality of parental involvement in the NICU. Six themes were identified as follows: (1) setting for communication: parents preferred face to face meetings with clinicians; (2) content and clarity of language: parents valued clear language (use of layman's terms) and being explicitly told the medical diagnosis of HIE; (3) immediate and longitudinal emotional support: parents required support from clinicians to process the trauma of the birth experience and hypothermia treatment; (4) clinician time and scheduling: parents valued the ability to join rounds and other major conversations about infant care; (5) valuing the parent role: parents desired being actively involved in rounds, care times, and decision-making; (6) physical presence and touch: parents valued being physically present and touching their baby; this presence was limited by the novel coronavirus disease 2019 (COVID-19)-related restrictions. CONCLUSION: We highlight stakeholder views on parent involvement and parent-clinician communication in the NICU and note significant overlap with principles of trauma informed care: safety (physical and psychological), trustworthiness and transparency, peer support, collaboration and mutuality, empowerment, and voice and choice. We propose that a greater understanding and implementation of these principles may allow the medical team to more effectively communicate with and involve parents in the care of infants with HIE in the NICU. KEY POINTS: · Parents of infants with HIE experience trauma both from the birth and the hypothermia treatment.. · Transparent communication and encouraging parental involvement can ameliorate this trauma.. · Employing trauma informed care principles supports these families and resists retraumatization..

Training in neonatal neurocritical care: a proposal for a hybrid model of competence by design and time-based methods.

BACKGROUND: Neonatal neurocritical care (NNCC) is a rapidly advancing field with limited fellowship training available in locally developed, non-accredited programs. A standardized survey aimed to understand the training backgrounds of individuals practicing NNCC, the structure of existing clinical NNCC services/training programs, and suggested clinical competencies for new graduates. METHODS: We developed an anonymous survey electronically sent to members of societies related to NNCC. Using the survey results as a guide, we discuss a competence by design (CBD) curriculum as a complementary approach to traditional time-based training. RESULTS: There were 82 responses to the survey from 30 countries; 95% of respondents were physicians. Thirty-one (42%) institutions reported having an NNCC service, 24 (29%) individuals reported formal NNCC training, 81% reported "significant variability" across NNCC training programs, and 88% were both in favor of standardizing training programs and pursuing formal accreditation for NNCC in the next 5 years. CONCLUSIONS: The survey results demonstrate international interest in standardizing NNCC training and development of an accreditation or certification process. We propose consideration of a CBD-type curriculum as a training approach to focus on the development of specific NNCC competencies, rather than assuming the acquisition of these competencies based on time as a surrogate. IMPACT: Continued growth and development in the field of NNCC has led to increasing need for training programs suited to meet the diverse needs of trainees from varied backgrounds. We present the results of an international survey that assessed the structure of existing training programs and the priority areas in which graduates must demonstrate competence, highlighting the combination of CBD and time-based training as one approach to address these recommendations. The survey results support interest in translating published training competencies, existing expertise, and infrastructure across centers into a standardized curriculum for NNCC including certification opportunities.

Supporting families in their child's journey with neonatal encephalopathy and therapeutic hypothermia.

Neonates and families face challenges in hypothermic therapy, including trauma to parents, extreme emotions, and unfamiliarity with the medical system. Communication is an essential element to supporting parents while their children are in the NICU, and beyond, building the foundation for the ongoing relationship the family has with the medical system. Significant consideration needs to be given to the critical element of integrating the family into the care of a baby being treated with therapeutic hypothermia. Clinicians can promote healing of accumulated traumas of parents through ensuring parent's emotional safety, facilitating a trusting relationship, and promoting parent empowerment. Connecting parents with resources, especially peer support, is an essential part of a hospital stay. In this chapter, we explore best practices to support families during and after hypothermic therapy.

Pilot study assessing the effect of osteopathic manipulative treatment (OMT) on length of stay in neonates after therapeutic hypothermia.

CONTEXT: Term neonates treated with therapeutic hypothermia (TH) may experience delays in acquiring skills for oral feeding, thus prolonging hospital admission. OBJECTIVE: To determine whether osteopathic manipulative treatment (OMT) can decrease the overall length of stay (LOS) for term neonates by accelerating the transition to full oral feeds. METHODS: A pilot study was conducted to compare LOS in term neonates treated with OMT to matched historical controls. Eligibility criteria were gestational age greater than or equal to 37 weeks, mild to moderate encephalopathy, absent seizure activity, and no brain injury on magnetic resonance imaging. Treated neonates had OMT twice between day of life four and seven, then twice per week on nonconsecutive days until hospital discharge. Secondary outcomes were to compare the number of days with nasogastric tube in both OMT and historically matched control groups and to characterize somatic dysfunction patterns in the primary affected areas of the craniosacral mechanism. RESULTS: Twelve of 28 neonates treated with TH between October 2017 and August 2018 met eligibility criteria for the study and were matched 3:1 to 36 historical controls. On average, mothers of neonates who received OMT were older than the historical control mothers (31.3 years [SD, ±6.0] vs. 27.4 [SD, ±4.5]; p=0.02) Nineteen of the 36 historical control neonates, but no neonates in the OMT group, were intubated for a median of two days (interquartile range 1, 4). The mean LOS in the OMT group was 9.1 vs. 11.6 days for historical controls (p=0.048); however, in a sensitivity analysis excluding intubated neonates from the historical controls, the difference was 9.1 vs. 10.1 days (p=0.21). All neonates were orally feeding at discharge. Neonates given OMT had between two and four treatments lasting 8-20 minutes. By the final treatment, the craniosacral mechanism's intraosseous and cranial base compressions and physiologic motion were improved. There were no adverse effects noted during OMT sessions. CONCLUSION: Our findings suggest that OMT performed on term neonates treated with TH may decrease the amount of time needed to acquire the necessary skills for oral feeding. Although this result was not statistically significant, it may be clinically significant. A larger prospective clinical trial may have the power needed to detect a statistically significant reduction in LOS and number of days to full oral feeds in this patient population.

Proxy Finnegan Component Scores for Eat, Sleep, Console in a Cohort of Opioid-Exposed Neonates.

OBJECTIVES: The Finnegan Neonatal Abstinence Score (FNAS) monitors infants with neonatal abstinence syndrome (NAS), but it has been criticized for being time consuming and subjective. Many institutions have transitioned to a more straightforward screening tool, Eat, Sleep, Console (ESC), an assessment based on 3 simple observations with a focus on maximizing nonpharmacologic therapies. We aimed to compare the sensitivity and specificity of the ESC with that of the FNAS to determine if infants who needed pharmacologic therapy could potentially be missed when assessed by using ESC. METHODS: A retrospective cohort study of infants identified by International Classification of Diseases, Ninth Revision and International Classification of Diseases, 10th Revision billing codes for NAS. FNAS scores were recorded every 4 hours for the entire hospitalization. ESC proxy scores were created by using components of the FNAS that referenced eating, sleeping, and consoling. Detailed demographic and clinical data were manually extracted regarding opioid exposures and pharmacologic treatment of NAS. RESULTS: From 2013 to 2016, 423 infants ≥37 weeks' gestation had a total of 33 115 FNAS scores over 921 days of observation. In total, 287 (68%) were exposed to buprenorphine, 100 (23.7%) were exposed to methadone, and 165 (39%) were pharmacologically treated. The FNAS was 94.8% sensitive and 63.5% specific for pharmacologic treatment, and the ESC proxy variables were 99.4% sensitive and 40.2% specific (P < .01). CONCLUSIONS: ESC proxy variables have slightly higher sensitivity compared with FNAS, suggesting that ESC use is unlikely to miss infants requiring treatment who would have been identified by FNAS. Transitioning from FNAS to ESC is not likely to impair the care of infants with NAS.

Validation of the suppression ratio from a simplified EEG montage during targeted temperature management after cardiac arrest.

AIM: The Suppression Ratio (SR) estimates the percent of the electroencephalography (EEG) epoch with very low voltage, and is associated with neurological outcome after cardiac arrest. We aimed to compare the SR generated by two monitoring devices and determine the association between SR and patterns on amplitude integrated EEG (aEEG) and full conventional EEG (cEEG). METHODS: Consecutive adult patients treated with TTM after cardiac arrest were enrolled. We compared the SR from the Medtronic Vista monitor (MSR) to the SR generated from the full montage cEEG with Persyst Magic-Marker software (PSR). A blinded neurologist, board certified in epilepsy, scored the 4-channel aEEG pattern and the cEEG background using standardized terminology. Values for SR were compared to aEEG and cEEG categories using Kruskal-Wallis ANOVA, and to each other using Altman-Bland methodology. RESULTS: 23 adults treated with TTM had a mean core temperature of 33.8 °C at the time of SR and EEG background analysis. The MSR was 0% during continuous cEEG background, 23% when cEEG was discontinuous, and 64% during cEEG burst suppression (p = 0.01). The MSR was 0% during aEEG continuous patterns, 34% during aEEG burst suppression, and 46% during flat aEEG (p < 0.001). The MSR and PSR were highly correlated (0.88, p < 0.0001), with minimal bias (0.3%) and excellent 95% limits of agreement (-2.9 to 2.4%). CONCLUSION: The Suppression Ratio from the Medtronic Vista monitor is highly correlated with the full montage SR from Persyst software. The MSR values are valid, changing with different aEEG patterns and cEEG background categories.

The Parental Experience of Newborns With Neonatal Abstinence Syndrome Across Inpatient Care Settings: A Qualitative Study.

OBJECTIVES: Understanding the experience of parents with newborns hospitalized with neonatal abstinence syndrome (NAS) across all inpatient settings is important in optimizing their involvement as part of the care team. A descriptive qualitative study design was utilized to understand the parental experience and identify barriers to parent involvement in care of newborns with NAS care. METHODS: Semistructured one-on-one interviews were conducted with parents of a convenience sample of fifteen infants admitted for NAS in the newborn nursery and level II/III neonatal intensive care unit within a tertiary care center in Northern New England. Interviews were analyzed using thematic content analysis. RESULTS: Sixty percent of mothers were treated with buprenorphine during pregnancy, and 60% of infants required pharmacological treatment for NAS symptoms. The predominant themes of parental experience included preparation/education for hospitalization, communication with providers, NAS management, family resources, physical hospital environment, and maternal guilt. CONCLUSION: The parental experience of care for NAS is negatively affected by lack of standardized NAS education in the prenatal and postnatal settings, inconsistent communication with providers, the Finnegan scoring system, lack of provider sensitivity to parental substance use disorder, and maternal guilt. This study also highlights the parental desire to be more involved in the care of newborns with NAS.

Parental perceptions of neonatal therapeutic hypothermia; emotional and healing experiences.

Introduction: Parents of infants who undergo therapeutic hypothermia experience emotional challenges that have not been fully characterized. Comprehensive understanding of the parental experience of hypothermia is needed to provide better care to the family of the infant. This study aimed to improve the understanding of the parental emotional experience of therapeutic hypothermia in the Neonatal Intensive Care Unit (NICU).Methods: Semistructured interviews were conducted in a group setting with parents matched into groups according to the severity of the infant's presenting encephalopathy. The interviews were transcribed and coded into principal and additional subthemes.Results: Families of 15 infants, who were between 2 months and 2 years at the time of the interview, participated. Infants had a mean gestational age of 40.0 weeks and 11 (73%) were male. Eleven (73%) were transferred from other hospitals following birth and eight (53%) had seizures. Emotional Experiences was a principal theme and included subthemes of traumatic experiences, Loss of normalcy, and Separation of parent and infant. The birth was frequently described as traumatic with descriptions of chest compressions, excessive blood loss and infants not crying. Trauma was also described in the parental observations of the shivering hypothermic infant. Parents highlighted the loss of normalcy in terms of their expected birth narrative and the loss of the early opportunity to breastfeed and hold their infant. Parents reported that the physical separation imposed by hypothermia adversely impacted their ability to bond with their infant. Healing Experiences was the other principal theme with subthemes identified as Incorporation of parents into NICU care, Reclaiming parenthood and Support from other hypothermia families. Parents reported feeling a connection to their infant when they were involved in medical rounds and when asked to participate in routine care of their infant. Occasionally, parents strongly advocated for their own participation in a particular aspect of their infant's care such as a diaper change and this was perceived as reinforcing their role as parent. Lastly, parents requested greater access to peer support from parents who had experienced therapeutic hypothermia.Conclusion: Parents of infants treated with hypothermia reported the experience of their unexpected adverse delivery and their baby subsequently being treated with therapeutic hypothermia as traumatic. This trauma can be compounded by the pale, still and shivering appearance of their newborn and the delay in bonding as a result of physical separation during hypothermia treatment. Parents described feeling connected to their infant in the context of performing routine care activities and desired greater access to peer support. The themes reported in this study could be used to inform high level NICU care and raise provider awareness of the parent experience.