Participation des parents au processus de décision lors de la consultation anténatale pour l'enfant à risque de naître à la limite de la viabilité

Les choix du niveau de soins à offrir à l'enfant à risque de naître à la limite de la viabilité se situent entre deux pôles, d'un côté des soins de traitements intensifs pour préserver la vie mais associé à des risques de séquelles considérables et de l'autre côté, des soins palliatifs et le décès de l’enfant. Cette importante prise de décisions se discute principalement lors de la consultation anténatale. Pour les acteurs concernés (parents et néonatalogiste), le «meilleur intérêt de l’enfant», critère central à la prise de décision, se définit à partir de valeurs distinctes pour chacun des acteurs. Même si les sociétés professionnelles recommandent de « partager » le processus de décision avec les parents, la participation souhaitée par ces derniers à cette prise de décision est mal évaluée par les professionnels. De plus, ceux-ci limitent régulièrement la participation des parents bien que l'autorité parentale pour prendre les décisions au nom de leur enfant soit soutenue par les repères juridiques, éthiques et cliniques. Dans ce contexte, la présente recherche a étudié la communication entre les acteurs concernés menant à la participation satisfaisante des parents. Cinq systèmes - enfant à risque ont été analysés. Ces systèmes incluent les mères enceintes de 20+0/7 à 26+6/7 semaines de gestation, les conjoints des mères et le néonatalogiste (ou le résident de médecine néonatale périnatale) qui a fait la consultation. À partir de l’analyse ethnométhodologique des enregistrements audiovisuels des interactions entre les parents et le néonatalogiste pendant la consultation anténatale et des entrevues de recherche postconsultations avec les parents, des éléments clés menant à l'opportunité de participation des parents dans le processus de décision ont été identifiés et intégrés dans un modèle facilitant la participation satisfaisante pour les parents. Ces éléments clés (information pondérée, possibilité de choix, avoir du temps pour réfléchir, la relation de confiance parents - néonatalogiste) émergeant des témoignages des parents, suggèrent des stratégies de communication concrètes pour le néonatalogiste à appliquer en clinique. Les résultats de la présente étude soutiennent qu’au lieu de chercher à définir le rôle que les parents désirent occuper dans le processus de décision, il est préférable de faciliter la participation satisfaisante de ces derniers dans le processus de décision. C'est en utilisant des stratégies ciblées dans cette étude que le néonatalogiste pourra ajuster sa façon d'interagir en laissant participer les parents, comme ils le souhaitent dans la prise de décision du niveau de soins à offrir pour leur enfant à risque de naître à la limite de la viabilité

Chest compressions and epinephrine during resuscitation of infants born at the border of viability: Yes, no or maybe?

Neonatology, in large part due to its population of babies born at the edge of viability, is rife with bioethical issues. This unique population is at high risk of mortality and considerable neurodevelopmental morbidity. One contentious, ongoing debate concerns whether these extremely low birth weight infants born at the border of viability should, if required by the Neonatal Resuscitation Program guidelines, receive chest compressions and epinephrine as part of their delivery room resuscitation. The present article, through a case presentation and discussion based on the ethical framework of principlism, provides readers with a thoughtful approach to the controversial issue of the provision of chest compressions and epinephrine as part of resuscitation for extremely low birth weight infants born at the border of viability. La néonatologie, en grande partie à cause de sa population de bébés nés à la limite de la viabilité, regorge d’enjeux bioéthiques. Cette population unique est très vulnérable à la mortalité et à une morbidité neurodéveloppementale considérable. Une question litigieuse et continue consiste à se demander si ces nourrissons d’extrême petit poids de naissance nés à la limite de la viabilité devraient, si les lignes directrices du Programme de réanimation néonatale l’indiquent, recevoir des compressions thoraciques et de l’adrénaline dans le cadre de leur réanimation en salle d’accouchement. Au moyen d’une présentation de cas et d’un exposé fondé sur la structure éthique du principlisme, le présent article offre au lecteur une démarche réfléchie à l’égard de la question controversée d’administrer des compressions thoraciques et de l’adrénaline dans le cadre de la réanimation de nourrissons d’extrême petit poids de naissance nés à la limite de la viabilité

Risk factors for re-hospitalization following neonatal discharge of extremely preterm infants in Canada

Objective: Survivors of extremely preterm birth are at risk of re-hospitalization but risk factors in the Canadian population are unknown. Our objective is to identify neonatal, sociodemographic, and geographic characteristics that predict re-hospitalization in Canadian extremely preterm neonates. Methods: This is a retrospective analysis of a prospective observational cohort study that included preterm infants born 22 to 28 weeks’ gestational age from April 1, 2009 to September 30, 2011 and seen at 18 to 24 months corrected gestational age in a Canadian Neonatal Follow-Up Network clinic. Characteristics of infants re-hospitalized versus not re-hospitalized are compared. The potential neonatal, sociodemographic, and geographic factors with significant association in the univariate analysis are included in a multivariate model. Results: From a total of 2,275 preterm infants born at 22 to 28 weeks gestation included, 838 (36.8%) were re-hospitalized at least once. There were significant disparities between Canadian provincial regions, ranging from 25.9% to 49.4%. In the multivariate logistic regression analysis, factors associated with an increased risk for re-hospitalization were region of residence, male sex, bronchopulmonary dysplasia, necrotizing enterocolitis, prolonged neonatal intensive care unit (NICU) stay, ethnicity, Indigenous ethnicity, and sibling(s) in the home. Conclusion: Various neonatal, sociodemographic, and geographic factors predict re-hospitalization of extremely preterm infants born in Canada. The risk factors of re-hospitalization provide insights to help health care leaders explore potential preventative approaches to improve child health and reduce health care system cost

Testing a communication assessment tool for ethically sensitive scenarios: Protocol of a validation study

Background: Although well-designed instruments to assess communication during medical interviews and complex encounters exist, assessment tools that differentiate between communication, empathy, decision-making, and moral judgment are needed to assess different aspects of communication during situations defined by ethical conflict. To address this need, we developed an assessment tool that differentiates competencies associated with practice in ethically challenging situations. The competencies are grouped into three distinct categories

Association of Co-Exposure of Antenatal Steroid and Prophylactic Indomethacin with Spontaneous Intestinal Perforation

Objective: To evaluate the association of a combined exposure to antenatal steroids and prophylactic indomethacin with the outcome of spontaneous intestinal perforation (SIP) among neonates born at \u3c26 weeks of gestation or \u3c750 g birth weight. Study design: We conducted a retrospective study of preterm infants admitted to Canadian Neonatal Network units between 2010 and 2018. Infants were classified into 2 groups based on receipt of antenatal steroids; the latter subgrouped as recent (≤7 days before birth) or latent (\u3e7 days before birth) exposures. The co-exposure was prophylactic indomethacin. The primary outcome was SIP. Multivariable logistic regression analysis was used to calculate aORs. Results: Among 4720 eligible infants, 4121 (87%) received antenatal steroids and 1045 (22.1%) received prophylactic indomethacin. Among infants exposed to antenatal steroids, those who received prophylactic indomethacin had higher odds of SIP (aOR 1.61, 95% CI 1.14-2.28) compared with no prophylactic indomethacin. Subgroup analyses revealed recent antenatal steroids exposure with prophylactic indomethacin had higher odds of SIP (aOR 1.67, 95% CI 1.15-2.43), but latent antenatal steroids exposure with prophylactic indomethacin did not (aOR 1.24, 95% CI 0.48-3.21), compared with the respective groups with no prophylactic indomethacin. Among those not exposed to antenatal steroids, mortality was lower among those who received prophylactic indomethacin (aOR 0.45, 95% CI 0.28-0.73) compared with no prophylactic indomethacin. Conclusions: In preterm neonates of \u3c26 weeks of gestation or birth weight \u3c750 g, co-exposure of antenatal steroids and prophylactic indomethacin was associated with SIP, especially if antenatal steroids was received within 7 days before birth. Among those unexposed to antenatal steroids, prophylactic indomethacin was associated with lower odds of mortality

Pandemic planning : Developing a triage framework for Neonatal Intensive Care Unit

Although the Covid-19 pandemic has not had a direct impact on neonates so far, it has raised concerns about resource distribution and showed that planning is required before the next crisis or pandemic. Resource allocation must consider unique Neonatal Intensive Care Unit (NICU) attributes, including physical space and equipment that may not be transferable to older populations, unique skills of NICU staff, inherent uncertainty in prognosis both antenatally and postnatally, possible biases against neonates, and the future pandemic disease’s possible impact on neonates. We identified the need for a validated Neonatal Severity of Illness Prognostic Score to guide triage decisions. Based on this score, triage decisions are the responsibility of an informed triage team not involved in direct patient care. Support for the distress experienced by parents and staff is needed. This paper presents essential considerations in developing a practical framework for resources and triage in the NICU before, during and after a pandemic.Medicine, Faculty ofNon UBCPediatrics, Department ofReviewedFacult

Shared Decision Making at the Limit of Viability: A Blueprint for Physician Action.

To document interactions during the antenatal consultation between parents and neonatologist that parents linked to their satisfaction with their participation in shared decision making for their infant at risk of being born at the limit of viability.This multiple-case ethnomethodological qualitative research study, included mothers admitted for a threatened premature delivery between 200/7 and 266/7 weeks gestation, the father, and the staff neonatologist conducting the clinical antenatal consultation. Content analysis of an audiotaped post-antenatal consultation interview with parents obtained their satisfaction scores as well as their comments on physician actions that facilitated their desired participation.Five cases, each called a "system-infant at risk", included 10 parents and 6 neonatologists. From the interviews emerged a blueprint for action by physicians, including communication strategies that parents say facilitated their participation in decision making; such as building trustworthy physician-parent relationships, providing "balanced" information, offering choices, and allowing time to think.Parent descriptions indicate that the opportunity to participate to their satisfaction in the clinical antenatal consultation depends on how the physician interacts with them.The parent-identified communication strategies facilitate shared decision making regarding treatment in the best interest of the infant at risk to be born at the limit of viability

Chest compressions and epinephrine during resuscitation of infants born at the border of viability: Yes, no or maybe?

Neonatology, in large part due to its population of babies born at the edge of viability, is rife with bioethical issues. This unique population is at high risk of mortality and considerable neurodevelopmental morbidity. One contentious, ongoing debate concerns whether these extremely low birth weight infants born at the border of viability should, if required by the Neonatal Resuscitation Program guidelines, receive chest compressions and epinephrine as part of their delivery room resuscitation. The present article, through a case presentation and discussion based on the ethical framework of principlism, provides readers with a thoughtful approach to the controversial issue of the provision of chest compressions and epinephrine as part of resuscitation for extremely low birth weight infants born at the border of viability

Physician actions and communication strategies identified by parents as facilitating their satisfaction with their participation in decision making.

<p>Physician actions and communication strategies identified by parents as facilitating their satisfaction with their participation in decision making.</p