Parents' experiences of care decisions about children with life-limiting illnesses

To understand the 'lived experience' of parents throughout the process of making and revising end of life care decisions for their child.

Three mothers who had been bereaved participated in semi-structured interviews. These were recorded, transcribed and analysed using interpretative phenomenological analysis.

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.

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.