ArticlePalliative medicine2024
'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.
Article in Palliative medicine, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
7 citing papers in PubMed.
- Nurses' stressful experiences in providing palliative and end-of-life care for children: A meta-synthesis.Palliative & supportive care · 2026Review
- How are agency and autonomy understood in children's palliative and end-of-life care?: A narrative review.Palliative care and social practice · 2026Review
- Reinterpreting words and making connections: an experience with an educational book about childhood cancer.Revista brasileira de enfermagem · 2026Article
- What Constitutes High-Quality Paediatric Palliative Care? A Qualitative Exploration of the Perspectives of Children, Young People, and Parents.The patient · 2025Article
- Developing a Theory of Change and Implementation Plan to implement a novel child- and family-centred outcome measure in paediatric palliative care.Palliative medicine · 2025Article
- 'It's hard not to feel like somehow I fell short': A discourse analysis of palliative care providers' experiences with patients' nonphysical suffering.Palliative care and social practice · 2025Article
- Development of a child and family centred outcome measure for children and young people with life-limiting and life-threatening conditions: progress to date on the Children's Palliative Care Outcome Scale (C-POS:UK).Palliative care and social practice · 2024Article
Corrections and comments
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Authors and funding
12 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundChildren 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.
aimTo explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities.
designPositioned within a SETTING/
participantsA 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.
resultsThe 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.
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