Communication, information, and the parent-caregiver relationship in neonatal intensive care units: A review of the literature.

This literature review focuses on the neonatal context. It provides an update of knowledge on the psychosocial consequences and communication needs expressed by parents. It highlights the obstacles to communication and proposes lines of thought for the development of new training systems to improve the communication practices of caregivers. OBJECTIVE: This review aims to assess and categorize the specific needs and expectations of families in terms of communication within the neonatal intensive care unit (NICU). METHODS: A bibliographic search was carried out on the Web of Sciences, PubMed and PsycArticles databases with the following keywords: "neonat* AND new* AND communication AND parent*". RESULTS: In total, 16 papers were selected showing that information and communication are particular needs for parents in NICUs. They are confronted with a stressful situation and have to deal with the fear and anticipation of the situation in a context of uncertainty. Parents are satisfied with the caregiver-parent relationship when the type of communication is adapted to the context and to their changing needs. Conversely, they feel excluded when they cannot be involved as they would like to be in the care or in the decision-making process. CONCLUSION: The development of new communication training methods and tools such as simulation would allow healthcare workers to acquire new communication skills focused on the needs of families.

Les soignants de périnatalité face à la COVID-19 : stress, qualité de vie et préoccupations Perinatal caregivers coping with covid-19 : stress, quality of life and concerns.

AIMS: The first wave of the COVID-19 pandemic generated "risks" and uncertainties as well as organizational changes among French perinatal caregivers. Our study aimed to investigate the psychosocial impact of the first wave on this population. METHOD: Our participants (N=565) were invited to answer an online questionnaire that included questions on various indices of health and quality of life at work (e.g., ProQoL, perceived stress) and other questions on the impact of the pandemic on work organization. An open-ended question was designed to identify the participants' three most frequently perceived preoccupations with regard to the health situation. RESULTS: In addition to highlighting the multifactorial nature of participants' preoccupations, our results illustrated the effect of professional status and type of motherhood on the different indices of health and quality of life at work. When it was found that the pandemic had an impact on work organization and on teams, lower health and quality of work life scores were recorded. On the other hand, when positive impacts on organization were reported, mainly in terms of reduced work intensity, they were associated with higher health and quality of work life scores. CONCLUSION: We explain this last result as either one actual effect of the pandemic on work organization, or as a phenomenon of cognitive rationalization.

Analysis of communication and logistic processes in neonatal intensive care unit.

BACKGROUND: In neonatology, parents play a central role as guarantors of the new-born's autonomy. Notifying parents about their infant's status in neonatal critical care is an integral part of the care. However, conveying this information can be very difficult for physicians and the neonatal medical team. The objective of this work is to assess the dimensions and dynamic processes of critical care communications in neonatal intensive care in order to enhance the development of theoretical and applied knowledge of these discussions. METHODS: This qualitative, descriptive study was conducted on critical care new-borns less than 28 days-old who were hospitalized in a neonatal intensive care unit. Verbatim communications with the parents were recorded using a dictaphone. RESULTS: The verbatim information had five themes: (a) critical care, (b) establishing the doctor-patient relationship, (c) assistance in decision making, (d) Socio-affective and (e) socio-symbolic dimensions. Our recordings underscored both the necessity of communication skills and the obligation to communicate effectively. Analysis of the dynamics of the communication process, according to the categories of delivering difficult information, showed few significant differences. CONCLUSION: Physician training needs to include how to effectively communicate to parents to optimize their participation and cooperation in managing their care.

New ethical challenges in the management of rare pediatric diseases with innovative therapies.

INTRODUCTION: Rare diseases, despite their low individual prevalence, affect a large number of children. Their management has considerably improved recently due to new treatments, modifying the diseases evolution without being totally curative. Since this raises many ethical dilemmas, we present a study about respecting the principles of medical ethics in the management of rare diseases in pediatrics. MATERIAL AND METHODS: We carried out a qualitative study in a French pediatric neurology department. In our study, we included health caregivers and parents of children being monitored for rare diseases and benefiting from innovative therapies. We conducted semi-structured interviews and, after transcription, we performed computerized and manual analysis. RESULTS: A total of 26 participants were included. Six main themes were addressed: rare diseases, science and medical research, general disease management, specific innovative treatments, neonatal screening, and cost of these treatments. Discussions centered on the children. Particular importance was given to the notions of information and the physician/family relationship. A major place is given to the treatment objectives and the improvement of quality of life. We also noted a sense of satisfaction with the current overall management of these diseases. CONCLUSION: Our study suggests that our current practice, including the use of innovative therapies, respects the four main ethical principles, from the points of view of both caregivers and parents.

Association between extremely preterm caesarean delivery and maternal depressive and anxious symptoms: a national population-based cohort study.

OBJECTIVE: To evaluate whether caesarean delivery before 26 weeks of gestation was associated with symptoms of depression and anxiety in mothers in comparison with deliveries between 26 and 34 weeks. DESIGN: Prospective national population-based EPIPAGE-2 cohort study. SETTING: 268 neonatology departments in France, March to December 2011. POPULATION: Mothers who delivered between 22 and 34 weeks and whose self-reported symptoms of depression (Center for Epidemiologic Studies Depression Scale: CES-D) and anxiety (State-Trait Anxiety Inventory: STAI) were assessed at the moment of neonatal discharge. METHODS: The association of caesarean delivery before 26 weeks with severe symptoms of depression (CES-D ≥16) and anxiety (STAI ≥45) was assessed by weighted and design-based log-linear regression model. MAIN OUTCOME MEASURES: Severe symptoms of depression and anxiety in mothers of preterm infants. RESULTS: Among the 2270 women completing CES-D and STAI questionnaires at the time of neonatal discharge, severe symptoms of depression occurred in 25 (65.8%) women having a caesarean before 26 weeks versus in 748 (50.6%) women having a caesarean after 26 weeks. Caesarean delivery before 26 weeks was associated with severe symptoms of depression compared with caesarean delivery after 26 weeks (adjusted relative risk [aRR] 1.42, 95% CI 1.12-1.81) adjusted to neonatal birthweight and severe neonatal morbidity among other factors. There was no evidence of an association between mode of delivery and symptoms of anxiety. CONCLUSIONS: Mothers having a caesarean delivery before 26 weeks' gestation are at high risk of symptoms of depression and may benefit from specific preventive care. TWEETABLE ABSTRACT: Mothers having caesarean delivery before 26 weeks' gestation are at high risk of symptoms of depression.

The impact of chorionicity on pregnancy outcome and neurodevelopment at 2 years old among twins born preterm: the EPIPAGE-2 cohort study.

OBJECTIVE: To compare the short- and mid-term outcomes of preterm twins by chorionicity of pregnancy. DESIGN: Prospective nationwide population-based EPIPAGE-2 cohort study. SETTING: 546 maternity units in France, between March and December 2011. POPULATION: A total of 1700 twin neonates born between 24 and 34 weeks of gestation. METHODS: The association of chorionicity with outcomes was analysed using multivariate regression models. MAIN OUTCOME MEASURES: First, survival at 2-year corrected age with or without neurosensory impairment, and second, perinatal, short-, and mid-term outcomes (survival at discharge, survival at discharge without severe morbidity) were described and compared by chorionicity. RESULTS: In the EPIPAGE 2 cohort, 1700 preterm births were included (850 twin pregnancies). In all, 1220 (71.8%) were from dichorionic (DC) pregnancies and 480 from monochorionic (MC) pregnancies. MC pregnancies had three times more medical terminations than DC pregnancies (1.67 versus 0.51%, P < 0.001), whereas there were three times more stillbirths in MC than in DC pregnancies (10.09 versus 3.78%, P < 0.001). Both twins were alive at birth in 86.6% of DC pregnancies compared with 80.0% among MC pregnancies (P = 0.008). No significant difference according to chorionicity was found regarding neonatal deaths and morbidities. Likewise, for children born earlier than 32 weeks, the 2-year follow-up neurodevelopmental results were not significantly different between DC and MC twins. CONCLUSIONS: This study confirms that MC pregnancies have a higher risk of adverse outcomes. However, the outcomes among preterm twins admitted to neonatal intensive care units are similar irrespective of chorionicity. TWEETABLE ABSTRACT: Monochorionicity is associated with adverse perinatal outcomes, but outcomes for preterm twins are comparable irrespective of their chorionicity.

Effect of written outcome information on attitude of perinatal healthcare professionals at the limit of viability: a randomized study.

BACKGROUND: Differences in perception and potential disagreements between parents and professionals regarding the attitude for resuscitation at the limit of viability are common. This study evaluated in healthcare professionals whether the decision to resuscitate at the limit of viability (intensive care versus comfort care) are influenced by the way information on incurred risks is given or received. METHODS: This is a prospective randomized controlled study. This study evaluated the attitude of healthcare professionals by testing the effect of information given through graphic fact sheets formulated either optimistically or pessimistically. The written educational fact sheet included three graphical presentations of survival and complication/morbidity by gestational age. The questionnaire was submitted over a period of 4 months to 5 and 6-year medical students from the Geneva University as well as physicians and nurses of the neonatal unit at the University Hospitals of Geneva. Our sample included 102 healthcare professionals. RESULTS: Forty-nine responders (48%) were students (response rate of 33.1%), 32 (31%) paediatricians (response rate of 91.4%) and 21 (20%) nurses in NICU (response rate of 50%). The received risk tended to be more severe in both groups compared to the graphically presented facts and current guidelines, although optimistic representation favoured the perception of "survival without disability" at 23 to 25 weeks. Therapeutic attitudes did not differ between groups, but healthcare professionals with children were more restrained and students more aggressive at very low gestational ages. CONCLUSION: Written information on mortality and morbidity given to healthcare professionals in graphic form encourages them to overestimate the risk. However, perception in healthcare staff may not be directly transferable to parental perception during counselling as the later are usually naïve to the data received. This parental information are always communicated in ways that subtly shape the decisions that follow.

Thoracic ultrasound accuracy for the investigation of initial neonatal respiratory distress.

Thoracic ultrasound (TUS) is increasingly studied in neonatal respiratory distress but chest x-ray (CXR) remains the first-line exam. We aimed to evaluate its diagnostic performance for the investigation of unselected causes of neonatal respiratory distress in daily practice. We conducted a descriptive, prospective, and single-center diagnostic accuracy study in a tertiary hospital, including term and preterm newborns who needed a CXR because of respiratory conditions occurring at birth or during the first 24h of life. TUS was compared to the reference diagnosis, which was the association between the CXR results, the clinical initial context, and the patient's outcome. Fifty-two newborns were included and 104 hemi-thorax ultrasounds were analyzed. Sensitivity, specificity, positive and negative predictive values (PPV, NPV), diagnosis accuracy, as well as the positive and negative likelihood ratio of TUSs were 100% for respiratory distress syndrome (RDS), transient tachypnea of newborn (TTN), pneumomediastinum, meconium aspiration syndrome, and absence of pulmonary disease. TUS also showed 100% sensitivity and NPV for pneumothorax, but specificity was 97% and PPV was 50%. Kappa concordance between TUS and either CXR alone or the radiological/clinical gold standard was 0.79 and 0.95, respectively. CONCLUSION: TUS at the newborn's bedside is efficient for investigating the main neonatal respiratory diseases, especially for the confirmation of RDS or TTN and for the exclusion of differential diagnosis or complications.

Formal procedure to facilitate the decision to withhold or withdraw life-sustaining interventions in a neonatal intensive care unit: a seven-year retrospective study.

BACKGROUND: Neonatal deaths are often associated with the complex decision to limit or withdraw life-sustaining interventions (LSIs) rather than therapeutic impasses. Despite the existence of a law, significant disparities in clinical procedures remain. This study aimed to assess deaths occurring in a Neonatal Intensive Care Unit (NICU) and measure the impact of a traceable Limitation or Withdrawal of Active Treatment (LWAT) file on the treatment of these newborns. METHODS: In this monocentric retrospective study, we reviewed all consecutive neonatal deaths occurring during two three-year periods among patients in the NICU at the North Hospital of Marseille: cohort 1 (from 2009 to 2011 without the LWAT file) and cohort 2 (from 2013 to 2015 after introduction of the LWAT file). Newborns included were: gestational age over 22 weeks, birth weight over 500 g, and admission and death in the same NICU. Deaths were categorized according to the classification described by Verhagen et al.: 1) children who died despite cardiopulmonary resuscitation (CPR) (no withholding nor withdrawing of LSIs), (2) children who died while the ventilator, without CPR (no withdrawing of LSIs, but CPR withheld), (3) children who died after LSIs were withdrawn, or (4) LSIs were withheld. RESULTS: 193 deaths were analyzed: 77 in cohort 1 and 116 in cohort 2. 50% of deaths followed the decision to limit or stop life-sustaining interventions. The mean age at death did not differ between the two cohorts (p = 0.525). An increase in the mortality rate after life-sustaining interventions were withdrawn was observed. The number of multidisciplinary decision meetings was statistically higher in cohort 2 (32.5% versus 55.2% p = 0.002), which were most often prompted due to neurological pathologies, with an increase in parental advice concerning the management of their child (p = 0.026). Even if the introduction of this file did not have an effect on patient age at death, it was significantly associated with a better understanding of end-of-life conditions (p = 0.019), including medication used to sedate and comfort the patient. CONCLUSIONS: Introduction of the LWAT file seems imperative to develop a personalized healthcare strategy for each child and situation.

[Medical simulation as a tool in the training of perinatal professionals]. / La simulation médicale comme outil dans la formation des professionnels de la périnatalité.

Though technology plays an increasingly important role in modern health systems, human performance remains a major determinant of safety, effectiveness and efficiency of patient care. This is especially true in the delivery room. Thus, the training of professionals must aim not only for the acquisition of theory and practical skills on an individual basis, but also for the learning of teamwork systematically. Training health professionals with simulation enhances their theoretical knowledge and meets formal requirements in literacy, technical skills and communication. Therefore, we intend to explore how, in perinatal care, training with simulation is actually a key teaching tool in initial education and in perpetuation of knowledge. We will approach three main aspects: individual, collective (team) and the impact of simulation in medical practice. The choice of this educational strategy improves the clinical skills that are required for optimal performance in complex, unpredictable and high-stake environments such as the delivery room. Nonetheless, the long term clinical impact of simulation and whether it's modalities, technical or not, are beneficial to the mother and the newborn are areas still to be explored.

[Newborn outcomes after radiofrequency ablation for selective reduction in the complicated monochorionic pregnancies]. / Devenir neurodéveloppemental des nouveau-nés issus de grossesses monochoriales compliquées avec interruption sélective par ablation par radiofréquence.

OBJECTIVE: To describe perinatal data and to evaluate the neonatal neurological outcome of monochorionic twin pregnancies with selective termination by radiofrequency ablation. METHODS: Retrospective data of perinatal data for nine consecutive monochorionic pregnancies eligible for radiofrequency ablation from January 2013 to August 2015 were collected. A prospective observational study of the neurological outcome of nine children was conducted using the Ages & Stages Questionnaire (ASQ), 2nd edition, French version, adapted to the age. RESULTS: The radiofrequency procedures were performed at a mean gestational age (GA) of 21.4 weeks (±7 weeks). The indications for a selective interruption of a pregnancy were: acardiac twin (n=4), brain malformation (n=1), severe intrauterine growth restriction (IUGR) with massive cerebral ischemia in the context of twin-twin transfusion syndrome grade III (n=1), severe selective IUGR associated with a polymalformative syndrome (n=1) and severe selective IUGR (n=2). The mean GA at birth was 36.7 weeks GA (±3.8 weeks). No infant showed neurological neonatal morbidity. Any ASQ area explored was pathological (<-2SD) for the nine children (mean age at follow-up [±SD], 14.8 months [±8.8 months]). CONCLUSION: This work constitutes a preliminary study for developing long-term follow-up and early care programs for those children born subsequent to a radiofrequency ablation for selective reduction.

[Focus on placental transfusion for preterm neonates: Delayed cord clamping and/or milking?] / Stratégies de transfusion placentaire pour le nouveau-né prématuré : clampage retardé et/ou traite du cordon ?

Anemia of prematurity remains a common complication despite recent advances in perinatal and neonatal medicine. The delayed cord clamping (at least 30seconds as recommended) has several benefits: increased hemoglobin and hematocrit levels at birth, improved initial hemodynamic, decreased incidence of transfusions and intraventricular hemorrhages. When the birth transition is difficult, wait 30seconds before clamping can be impossible. So as not to interfere with the neonatal resuscitation, the "milking" has been proposed as an alternative method to the delayed cord clamping. This is a safe and easy method, which can be done either by an obstetrician or pediatrician with comparable results for the child on his hemodynamic, hematological and neurological status. It still lacks technical information on this method and neurodevelopmental outcomes of these preterm infants.

[Perinatal palliative care in France: Who? Why? How?]. / Soins palliatifs périnatals en France : pour qui ? Pourquoi ? Comment ?

Severe congenital or morphologic anomalies are one of the main causes of infant morbidity and mortality. Some of these prenatally-diagnosed pathologies are incompatible with postnatal survival. In this context, some women choose to continue with pregnancy. Subsequently, perinatal palliative care seems to be a constructive answer to offer in such situations. At international level, this is a new clinical practice where decision dilemmas exist (prognostic uncertainty, prolonged survival, and attachment to the infant). It might be necessary to identify the factors that can affect these ethical tensions. With no national data, we explored the perceptions and professional practices that may influence parental requests for continuing with pregnancy, despite the uncertainty corresponding to the postnatal condition of a newborn with a lethal pathology. This exploration aims to question and debate current norms, especially in medical termination of pregnancy, discussing the dilemmas and divergences that affect decision-making and professional practices in neonatal palliative care. Reflection is also necessary on how to find an answer that can make sense within a request for continuation of pregnancy, despite the uncertainty inherent in the postnatal period in case of live birth of a newborn with a lethal abnormality.

Posture and movement in very preterm infants at term age in and outside the nest.

OBJECTIVE: The objective of this study is to evaluate the use of nests on general movements (GM) and posture in very preterm infants at term age. METHOD: Seventeen high-risk preterm infants-less than 30 weeks of gestation (GA)-underwent a video recording, lying in supine position, with or without nest. Posture, GM quality, and movements made around the child's midline, as well as abrupt movements and frozen postures-in extension or flexion of the four limbs-were analyzed. RESULTS: Nest did not modify quality of GM. Children significantly adopted a curled-up position. The nest system was associated with an increase in movements toward or across the midline, as well as reduction of the hyperextension posture and head rotation movements. Frozen postures in flexion or extension, as well as abrupt movements of the four limbs, were reduced but not significantly. CONCLUSIONS: Nest helps very preterm infants to adopt semi-flexed posture and facilitates movements across the midline and reduces movements of spine hyperextension, without GM global quality modifications.

[Palliative care birth plan: a field of perinatal medicine to build]. / Projets de naissance en soins palliatifs : un domaine de la périnatalité à construire.

Some couples may choose to continue the pregnancy unable to decide for termination of pregnancy. Such situations recently occurred in neonatology units and may lead to neonatal palliative care. Faced with all uncertainties inherent to medicine and the future of the baby, medical teams must inform parents of different possible outcome step by step. Consistency in the reflection and intentionality of the care is essential among all different stakeholders within the same health team to facilitate support of parents up to a possible fatal outcome. This issue in perinatal medicine seems to be to explore how caregivers can contribute in the construction of parenthood in a context of a palliative care birth plan.

[Cerebral hemorrhage in a mechanically ventilated asthmatic child: multifactorial mechanisms]. / Hémorragie cérébrale chez un enfant asthmatique ventilé : mécanismes multifactoriels.

We report the case of a 7-year-old boy with acute status asthmaticus requiring mechanic ventilation in the pediatric intensive care unit. He developed a brain hemorrhage during the course of his illness. We discuss the mechanisms that may have precipitated this neurological complication.

[Neuromyelitis optica in children. Two case reports]. / Neuromyélite optique chez l'enfant. À propos de deux cas.

Devic neuromyelitis optica (NMO) is an inflammatory demyelinating disease of the central nervous system associating acute transverse myelitis and optic neuritis. This is a different disease from multiple sclerosis for which the presence of the NMO antibody directed against aquaporin 4 is a specific marker. Brain damage on MRI does not exclude the diagnosis; the location is superposable in the brain zones rich in aquaporin 4 channels. We report 2 cases of NMO with anti-aquaporin 4. One patient was not symptomatic of brain damage. In this patient, the affinity of anti-NMO for aquaporin 4, studied by flow cytometry, was particularly high. Both patients were treated with immunosuppressive agents (rituximab) due to the failure of or dependence on high-dose corticosteroids.