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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., Competing Interests: Disclosure None., (Copyright © 2024 Elsevier Inc. All rights reserved.)

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., (© 2021. The Author(s), under exclusive licence to the International Pediatric Research Foundation, Inc.)

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.., Competing Interests: None declared., (Thieme. All rights reserved.)

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., Competing Interests: Sarah Gabrielson has the following disclosures: Stocks or stock options, excluding diversified mutual funds- Johnson & Johnson, United Healthcare, Idexx Labs, Mettler-Toledo International., (Copyright © 2023 the Author(s). Published by Wolters Kluwer Health, Inc.)

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., (© 2022. The Author(s), under exclusive licence to Springer Nature America, Inc.)

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., (Copyright © 2023 by the American Academy of Pediatrics.)

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., Competing Interests: Conflicts of interest None

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., (Copyright © 2021 Elsevier Ltd. All rights reserved.)

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.

Aims: To pilot the practicality of administering the Prechtl General Movements Assessment of infants (GMA) in the Neonatal Intensive Care Unit (NICU) setting and at home to infants at risk for developing cerebral palsy (CP). Additional aims included assessing inter-rater reliability and comparing GMA predictions to AIMS motor assessment at 12 months., Methods: 12 "at risk" infants were recruited by convenience sample. Video recordings were obtained in the NICU and provided by parents after discharge. These recordings were analyzed by two trained examiners to assess infants in the writhing and fidgety movement periods (birth to 16 weeks). Infants were assessed at 12 months corrected age using the Alberta Infant Motor Scale (AIMS) with scores lower than 5th centile considered a motor delay., Results: 33 of 42 videos (79%) were of sufficient quality to permit interpretation and there was 97% inter-examiner subcategory agreement and 100% overall developmental trajectory (abnormal/normal) agreement. The GMA demonstrated a sensitivity of 60% and a specificity of 100% in predicting AIMS score (age appropriate or delayed)., Conclusions: Clinical feasibility of GMA obtained in the NICU was demonstrated however feasibility of parents providing video samples after discharge was not demonstrated, indicating a need for a parent-friendly method.

Objective: We aimed to assess the parent experience of therapeutic hypothermia (TH), specifically focusing on unmet expectations., Study Design: Open-ended questions were used in a focus group setting. We employed an inductive approach to develop thematic content from the transcribed recordings., Results: 30 parents of infants treated with TH participated. Within the principal theme of managing expectations, four sub-themes emerged. These included parental concerns about morphine use; specifically the association of morphine with end-of-life care and addiction. Parents perceived their role as key in the decision to implement TH and were emotionally burdened by this during and after TH. Parents recall intense fear for the infant's immediate survival and were not sufficiently reassured regarding survival. Parents also experience ongoing uncertainties about the long-term prognosis after TH., Conclusion: The identification of these four areas in which parents have unmet expectations is important in order to improve the delivery of care.

Background: The unique communication challenges faced by parents of infants undergoing therapeutic hypothermia have not been well characterized., Purpose: To develop awareness of communication challenges experienced by families of infants treated with therapeutic hypothermia., 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: Thirty adults were interviewed including 15 mothers, 12 fathers, 2 grandmothers, and 1 grandfather. The 15 infants were between 2 and 24 months of age at the time of the interviews. The principal theme of communication included the following 3 subthemes; transparency, consistency, and delivery style. Parents reported a strong desire for improved early and transparent communication about therapeutic hypothermia, particularly during transfer from an outside hospital. Parents also reported a preference for consistent communication and highlighted parental touch of the hypothermic infant, obstetrical nurse-to-neonatal intensive care unit nurse communication, and parent and visitor presence in the infant's room as areas in need of greater communication consistency. Parents valued direct and compassionate communication styles that excluded medical jargon., Implications for Practice: All providers can implement recommendations for communication to parents of infants treated with therapeutic hypothermia by increasing transparency, developing greater consistency in the communication delivered, and employing a direct and compassionate style to improve the parental experience of therapeutic hypothermia., Implications for Research: Further investigation is needed into the specific challenges parents face with a lack of transparent communication prior to the transfer of an infant for therapeutic hypothermia.

Background: Rasburicase is a recombinant urate oxidase enzyme that converts uric acid to allantoin (an inactive and soluble metabolite that is readily excreted in urine). It is used for the management of tumor lysis syndrome (TLS) in cancer patients receiving chemotherapy. Although rasburicase is a generally safe and effective treatment, it can be associated with the rare and potentially severe complication of methemoglobinemia. Here, we report a case of rasburicase-induced methemoglobinemia in a patient who was diagnosed with aggressive non-Hodgkin's lymphoma., Case Report: A 74-year-old man with aggressive non-Hodgkin's lymphoma was admitted for initiation of chemotherapy. Upon admission, the patient was found to have hyperkalemia, hyperuricemia, hyperphosphatemia, elevated LDH levels, and acute renal failure. As a result, he was diagnosed with TLS. Rasburicase 6 mg was administered intravenously over a period of 30 min to treat TLS. Later, methemoglobinemia developed, with requirements for oxygen supplementation. Multiple units of packed red blood cells were transfused for recurrent significant anemia secondary to his cancer co-morbidity. The patient was tested for glucose-6 phosphate dehydrogenase (G6PD) deficiency, which returned negative; therefore, methylene blue was considered. After transfusion, the methemoglobin level normalized over the course of a few days, and the oxygen saturation improved without the use of methylene blue. However, during his hospitalization, the patient also developed a pulmonary embolism and had evidence of acute coronary syndrome. Later, the patient died of multiple complications related to his cancer co-morbidity on day 12 of admission., Conclusions: Blood transfusion and supplemental oxygen, without the use of methylene blue, may be an appropriate therapeutic alternative in rasburicase-induced methemoglobinemia treatment.