From the mouths of babes: narratives of children and young people with advanced or terminal illnesses

Death is the only certainty in life. Everyone dies eventually. Yet despite its inevitability, death and dying scenarios represent one of life’s most challenging areas of communication. This study delves into this important area of research by focusing a narrow lens on possibly the most unwanted deaths of all: those of children and young people. Using a narrative methodology, the research presents the stories of 13 children and young people with terminal or advanced illnesses, and the stories of some of their family members. Thematic findings include (1) acceptance and determination; (2) communication and ‘straight talk’; (3) sense-making; (4) isolation; (5) spiritual talk; (6); client control; (7) natural alliances; and (8) individuality. The study suggests applied perspectives within the context of interpersonal and organizational strategies, including conceptualizations of presence, listening, uncertainty expectation, internal sense-making, and language phraseology. The study concludes by offering future considerations within the realm of public policy and specific future research questions within the theoretical contexts of symbolic interactionism and identity.