title: Living with a crucial decision: a qualitative study of parental narratives three years after the loss of their newborn in the NICU.
abstract: BACKGROUND
  The importance of involving parents in the end-of-life decision-making-process (EOL DMP) for their child in the neonatal intensive care unit (NICU) is recognised by ethical guidelines in numerous countries. However, studies exploring parents' opinions on the type of involvement report conflicting results. This study sought to explore parents' experience of the EOL DMP for their child in the NICU.
  
  
  METHODS
  The study used a retrospective longitudinal design with a qualitative analysis of parental experience 3 years after the death of their child in four NICUs in France. 53 face-to-face interviews and 80 telephone interviews were conducted with 164 individuals. Semi-structured interviews were conducted to explore how parents perceived their role in the decision process, what they valued about physicians' attitudes in this situation and whether their long-term emotional well being varied according to their perceived role in the EOL DMP.
  
  
  RESULTS
  Qualitative analysis identified four types of perceived role in the DMP: shared, medical, informed parental decision, and no decision. Shared DM was the most appreciated by parents. Medical DM was experienced as positive only when it was associated with communication. Informed parental DM was associated with feelings of anxiousness and abandonment. The physicians' attitudes that were perceived as helpful in the long term were explicit sharing of responsibility, clear expression of staff preferences, and respectful care and language toward the child.
  
  
  CONCLUSIONS
  Parents find it valuable to express their opinion in the EOL DMP of their child. Nonetheless, they do need continuous emotional support and an explicit share of the responsibility for the decision. As involvement preferences and associated feelings can vary, parents should be able to decide what role they want to play. However, our study suggests that fully autonomous decisions should be misadvised in these types of tragic choices.
authors.affiliation: Centre Hospitalier Intercommunal de Creteil, Newborn Intensive Care Unit, Department of Research in Ethics EA 1610 Studies on Science and Techniques, Paris-South University, Creteil, France. laurencecmx@yahoo.fr
authors.forename: Laurence
authors.initials: L
authors.lastname: Caeymaex
authors.forename: Mario
authors.initials: M
authors.lastname: Speranza
authors.forename: Caroline
authors.initials: C
authors.lastname: Vasilescu
authors.forename: Claude
authors.initials: C
authors.lastname: Danan
authors.forename: Marie-Michèle
authors.initials: MM
authors.lastname: Bourrat
authors.forename: Micheline
authors.initials: M
authors.lastname: Garel
authors.forename: Catherine
authors.initials: C
authors.lastname: Jousselme
mesh_terms: D000328:Adult; D001291:Attitude of Health Personnel; D003643:Death; D003657:Decision Making; D003710:Demography; D004644:Emotions; D005260:Female; D005602:France; D006801:Humans; D007231:Infant, Newborn; D007363:Intensive Care Units, Neonatal; D007407:Interviews as Topic; D008297:Male; D033262:Narration; D010290:Parents / Q000523:psychology*; D011368:Professional-Family Relations; D036301:Qualitative Research