Parents of children who died from their brain tumours share common challenges during the neurological deterioration of their child, including balancing competing responsibilities and talking to their child about death.

摘要

Children with central nervous system (CNS) tumours have a higher mortality following their primary diagnosis than those with other childhood cancers (eg, leukaemia). Over the last decade, inadequate symptom relief and communication barriers between families and the healthcare team has been established and reported by parents caring for a child dying of cancer. A difference in the experience of end of life symptoms and parental experience by tumour type has been suggested in the literature. This paper explores the parental experience of caring for their children with terminal CNS tumours.