Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London, London, UK.
Royal Marsden NHS Foundation Trust, Sutton, UK.
Palliat Med. 2024 Mar;38(3):379-388. doi: 10.1177/02692163241233977. Epub 2024 Mar 4.
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.
To explore the language children and young people use to describe their own condition, to inform strategies for discussing needs and priorities.
Positioned within a ocial constructivist paradigm, a secondary discourse analysis of emi-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.
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.
患有危及生命疾病的儿童和青少年有多种需求，且认知和沟通能力存在差异。目前，仅有有限的证据支持临床医生根据每个儿童的个体情况调整沟通方式。
探索儿童和青少年用来描述自身状况的语言，为讨论需求和优先事项提供策略。
本研究采用社会建构主义范式，对包含比喻语言的半结构化访谈数据进行二次话语分析，采用话语动态方法分析比喻语言。
设置/参与者：共招募了 26 名年龄在 5-17 岁之间患有危及生命或生命有限疾病的儿童和青少年（癌症 6 例，非癌症 20 例），他们来自英国两个国家的 9 个临床服务机构（6 家医院和 3 家临终关怀机构）。
儿童和青少年使用的语言将他们定位为“自身状况的专家”。他们将医学术语与自己对身体的偏好术语结合起来描述症状和治疗方法，并使用比较级和最高级来交流他们的健康状况。他们的语言将自己的状况描述为“一系列（功能和社会）丧失”，这使他们与同龄人区分开来，成为“那个生病的人”。年龄较大的儿童和青少年也使用比喻语言来扩展他们的描述。
结论/讨论：儿童和青少年可以对自己的病情进行丰富的描述。关注他们的词汇选择，并使自己的语言与他们的语言相融合，可能会促进更以儿童为中心的讨论。在考虑到他们所经历的损失和差异的情况下，扩大关于“最重要的是什么”的讨论，可能会更全面地评估他们的关注、偏好和优先事项。
