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Archives de pédiatrie
Volume 20, n° 4
pages 356-363 (avril 2013)
Doi : 10.1016/j.arcped.2013.01.010
Received : 14 July 2012 ;  accepted : 19 January 2013
Vécu de parents ayant perdu un jumeau en réanimation néonatale : étude qualitative, 3 ans après le décès
Experience of parents after the loss of a newborn twin in the NICU: A qualitative study 3years after the death
 

C. Vasilescu a, M. Garel b, L. Caeymaex c, , d
a Service de réanimation néonatale, hôpital universitaire Paris-Sud Antoine-Béclère, 157, rue de la Porte-de-Trivaux, 92141 Clamart cedex, France 
b Inserm unité 953, hôpital Tenon, 4, rue de la Chine, 75970 Paris cedex 20, France 
c Service de médecine néonatale, hôpital d’appartenance, CHI de Créteil, 40, avenue de Verdun, 94010 Créteil, France 
d EA 1610, études sur les sciences et les techniques, laboratoire de recherche en éthique, Paris Sud, Paris Diderot, 94270 Le Kremlin-Bicêtre, France 

Auteur correspondant.
Résumé
Objectifs

La mortalité avant et après la naissance est élevée chez les jumeaux, confrontant les parents à un deuil très particulier. L’objectif de cette étude était de décrire les réactions des parents lors du décès d’un de leurs jumeaux en réanimation néonatale, la façon dont ils avaient investi l’enfant en vie et le rôle des soignants pour les aider.

Méthode et population

Dans une étude qualitative sur le devenir des parents après la perte d’un enfant dans 4 services français de réanimation néonatale, des entretiens semi-directifs ont été conduits 3 ans après le décès. Les entretiens ont été enregistrés, retranscrits et analysés (analyse de discours). Parmi les 166 parents ayant participé, 26 avaient perdu un jumeau.

Résultats

À propos du décès, les parents ont insisté sur la complexité des sentiments éprouvés, simultanés et antinomiques. Le deuil était rendu particulier par la difficulté à pleurer la perte de l’enfant décédé tout en s’occupant de l’enfant en vie. Le refoulement des affects, un risque de superposition des images de chaque enfant dans l’esprit des parents et de confusion dans les places de chacun ont été observés.

Conclusion

Lors de la perte d’un jumeau, les parents sont submergés par la coexistence de sentiments contradictoires. Les soignants doivent pouvoir entendre les parents évoquer des sentiments contradictoires et les soutenir dans la reconnaissance de l’existence et de la perte d’un des enfants et dans l’investissement de l’enfant en vie. Leur rôle est essentiel pour les aider à construire des histoires différentes avec chaque enfant.

The full text of this article is available in PDF format.
Summary
Introduction

The mortality rate both before and after birth is higher in twins. Parents face a particularly difficult mourning experience when confronted with the loss of 1 of their newborn twins. The aim of this article is to describe how parents experience and cope with this situation over the long term, how they describe the loss at the time of the death in a neonatal intensive care unit (NICU), the way they are able to become attached to the surviving twin, and the role that NICU caregivers can play to help them.

Method and population

This study is part of a larger qualitative study on parental mourning after the loss of a newborn in 4 NICUs in France. Semi-structured research interviews were conducted 3years after the death. The interviews were recorded, transcribed, and anonymized. Discourse analysis was used to extract the data on different themes. Among the 166 participating parents, 26 had lost a newborn twin.

Results

The parents reported their difficulties when faced with simultaneous contradictory events at the time of the death of a twin child in the NICU. Mourning appeared to be more difficult in this particular case: to combine the loss of a deceased child with the care of the surviving newborn was very complicated. The existence of the “co-twin” was described as an essential support for the parents; however, over the long term, this child could not fulfill the feelings of emptiness. The relation with this surviving child was sometimes disturbed by parental anxiety that the accident could recur. Fathers and mothers showed repression of their sadness and despair. The representations of the 2 children in their parents’ mind were sometimes very close or even overlapping and some parents were confused with regards to the place each of them could have. In the NICU, the caregivers should be able to listen to the parents expressing their contradictory feelings, to sustain the acknowledgement of the loss of 1 child, and in becoming attached to the surviving child. Parents need to be reassured about their living child’s health.

Conclusion

When faced with the loss of a newborn twin, parents are overwhelmed by the coexistence of contradictory feelings. The role of the medical staff is essential in building separate stories and having different memories for each child.

The full text of this article is available in PDF format.


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