Titre :

Parents' experiences of palliative care decision‐making in neonatal intensive care units: An interpretative phenomenological analysis

Auteur(s) :

Saint Denny, Kelly [Auteur]
Laboratoire Sciences Cognitives et Sciences Affectives - UMR 9193 [SCALab]
Lamore, Kristopher [Auteur]
Sciences Cognitives et Sciences Affectives (SCALab) - UMR 9193
Nandrino, Jean‐Louis [Auteur]
Sciences Cognitives et Sciences Affectives (SCALab) - UMR 9193
Rethore, Sabine [Auteur]
Centre hospitalier [Valenciennes, Nord]
Prieur, Charlotte [Auteur]
Centre Hospitalier Régional Universitaire [CHU Lille] [CHRU Lille]
Mur, Sebastien [Auteur]
Centre Hospitalier Régional Universitaire [CHU Lille] [CHRU Lille]
Storme, Laurent [Auteur]
METRICS : Evaluation des technologies de santé et des pratiques médicales - ULR 2694

Titre de la revue :

Acta Paediatrica

Nom court de la revue :

Acta Paediatrica

Éditeur :

Wiley

Date de publication :

2024-01-17

ISSN :

0803-5253

Discipline(s) HAL :

Sciences cognitives

Résumé en anglais : [en]

Aim: This work explores the experiences and meaning attributed by parents who underwent the decision‐making process of withholding and/or withdrawing life‐sustaining treatment for their newborn. Methods: Audio‐recorded ...
Lire la suite >Aim: This work explores the experiences and meaning attributed by parents who underwent the decision‐making process of withholding and/or withdrawing life‐sustaining treatment for their newborn. Methods: Audio‐recorded face‐to‐face interviews were led and analysed using interpretative phenomenological analysis. Eight families (seven mothers and five fathers) whose baby underwent withholding and/or withdrawing of life‐sustaining treatment in three neonatal intensive care units from two regions in France were included. Results: The findings reveal two paradoxes within the meaning‐making process of parents: role ambivalence and choice ambiguity. We contend that these paradoxes, along with the need to mitigate uncertainty, form protective psychological mechanisms that enable parents to cope with the decision, maintain their parental identity and prevent decisional regret. Conclusion: Role ambivalence and choice ambiguity should be considered when shared decision‐making in the neonatal intensive care unit. Recognising and addressing these paradoxical beliefs is essential for informing parent support practices and professional recommendations, as well as add to ethical discussions pertaining to parental autonomy and physicians' rapport to uncertainty.Lire moins >

Langue :

Anglais

Comité de lecture :

Oui

Audience :

Internationale

Vulgarisation :

Non

Établissement(s) :

Université de Lille
CNRS
CHU Lille

Collections :

• Sciences Cognitives et Sciences Affectives (SCALab) - UMR 9193

Équipe(s) de recherche :

Équipe Dynamique Émotionnelle et Pathologies (DEEP)

Date de dépôt :

2024-01-18T08:41:00Z
2024-01-24T08:25:47Z