title: Parents' experiences of care decisions about children with life-limiting illnesses.
abstract: OBJECTIVE
  To understand the 'lived experience' of parents throughout the process of making and revising end of life care decisions for their child.
  
  
  METHODS
  Three mothers who had been bereaved participated in semi-structured interviews. These were recorded, transcribed and analysed using interpretative phenomenological analysis.
  
  
  RESULTS
  Two overarching themes were identified: making decisions and revising and implementing end of life care plans. Sub-themes included: who should be the decision maker; when discussions should be initiated; the values underpinning the plans; revisiting the plans; and barriers and facilitators to their implementation.
  
  
  CONCLUSIONS
  Parents understand the importance of planning for the end of their child's life but find the process difficult. They also find it a challenge to verbalise their decisions at the end of their child's life and value having the decision partly taken away from them. Professionals can assist parents by using a non-dissent model of decision making. The parents' values are important in these decisions and should be elicited by professionals during the initial stages of decision making.
authors.affiliation: University of Nottingham.|Nottingham University Hospitals NHS Trust.
authors.forename: Emma
authors.initials: E
authors.lastname: Popejoy
mesh_terms: D002648:Child; D003657:Decision Making; D006801:Humans; D010290:Parents / Q000523:psychology*; D019452:Terminally Ill; D006113:United Kingdom
keywords: child health; decision making; dying; end of life care; life-limiting illness; paediatric nursing; parents’ experiences