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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.
A qualitative design from the viewpoint of 25 bereaved parents (a self-selecting convenient sample) participated in three focus groups; all were 3–12 years post the death of their children. The semi structured questions aimed to measure the quality of life and healthcare satisfaction in children with terminal cancer.
Identified themes included the experience of parents living through the dying trajectory of their child, parental struggle in …
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