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

Journal title
Nursing children and young people
Publication year
Popejoy, E.

AIM: To understand the ‘lived experience’ of parents throughout the process of making and revising end of life care decisions for their child. METHOD: Three mothers who had been bereaved participated in semi-structured interviews. These were recorded, transcribed and analysed using interpretative phenomenological analysis. FINDINGS: 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. CONCLUSION: 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.

Research abstracts