‘My life is a mess but I cope’: An analysis of the language children and young people use to describe their own life-limiting or life-threatening condition

• Published in: Palliative medicine 2024-03, Vol.38 (3), p.379-388
• Main Authors: Bristowe, Katherine, Braybrook, Debbie, Scott, Hannah M, Coombes, Lucy, Harðardóttir, Daney, Roach, Anna, Ellis-Smith, Clare, Bluebond-Langner, Myra, Fraser, Lorna, Downing, Julia, Murtagh, Fliss, Harding, Richard
• Format: Article
• Language: English
• Subjects: Cancer; Child psychology; Children; Clinical medicine; Communication; Discourse analysis; Health education; Health information; Health psychology; Health status; Hospices; Hospitals; Language; Life threatening; Medical terminology; Older children; Original; Pediatrics; Qualitative research; Teenagers; Terminal illnesses; Terminology; Youth
• ISSN: 0269-2163; 1477-030X
• DOI: 10.1177/02692163241233977

Background: Children and young people with life-limiting and life-threatening conditions have multidimensional needs and heterogenous cognitive and communicative abilities. There is limited evidence to support clinicians to tailor their communication to each individual child. Aim: To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities. Design: Positioned within a social constructivist paradigm, a secondary discourse analysis of semi-structured interview data was conducted incorporating the discourse dynamics approach for figurative language. Setting/participants: A total of 26 children and young people aged 5–17 years with life-limiting or life-threatening conditions (6 cancer; 20 non-cancer) were recruited from nine clinical services (six hospitals and three hospices) across two UK nations. Results: The language children and young people use positions them as ‘experts in their condition’. They combine medical terminology with their preferred terms for their body to describe symptoms and treatments, and use comparatives and superlatives to communicate their health status. Their language depicts their condition as a ‘series of (functional and social) losses’, which single them out from their peers as ‘the sick one’. Older children and young people also incorporate figurative language to expand their descriptions. Conclusion/discussion: Children and young people can provide rich descriptions of their condition. Paying attention to their lexical choices, and converging one’s language towards theirs, may enable more child-centred discussions. Expanding discussions about ‘what matters most’ with consideration of the losses and differences they have experienced may facilitate a fuller assessment of their concerns, preferences and priorities.