Abstract

Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children’s views, and research is needed to determine whether specialist input improves quality of life. The barriers as perceived by parents focus almost without exception on non-medical aspects: patient-doctor relationships; communication; decision-making, including end-of-life decision- making; and organisation. The perceived barriers indicate that care for children with a life-threatening condition focusses too much on symptoms and not enough on the human beings behind these symptoms