谈论未来残疾：新生儿与儿科重症监护病房家庭会议的定性分析
该描述性定性研究嵌入一项考察儿科与新生儿重症监护病房家庭会议动态与决策的定性研究，对68次家庭会议筛选后，45次（66%）包含残疾相关语言，通过事后二次分析归纳出5个主题，强调在医学教育中纳入残疾相关话题并开发培训工具。
要点
- 45/68次家庭会议（66%）包含残疾相关语言。
- 残疾语言通过明确命名残疾、分享残疾特征信息及使用有问题语言来体现。
- 归纳出5个主题：残疾委婉语、援引健康他者、生活质量与残疾的交集、用医学模型语境化残疾、残疾对家庭的影响。
核心结论
- 家庭成员与临床医生讨论和语境化残疾时使用的语言，为了解儿科与新生儿重症监护病房如何处理残疾提供了重要见解。
- 这些发现强调在医学教育中纳入残疾相关话题的重要性，并可为进一步开发培训工具提供参考。
研究设计与样本
- 描述性定性研究，嵌入一项考察儿科与新生儿重症监护病房家庭会议动态与决策的定性研究。
- 家庭会议涉及1岁或以下婴儿，召开目的为讨论神经预后或照护目标。
- 对家庭会议内容进行事后二次分析，以刻画讨论当前和/或未来残疾时使用的语言。
- 共筛选68次家庭会议，其中45次（66%）包含残疾语言。
主要发现
- 残疾通过明确命名残疾、分享残疾特征信息以及使用有问题语言被提及。
- 识别出5个进一步刻画残疾语言的主题：残疾委婉语、援引健康他者、生活质量与残疾的交集、用医学模型语境化残疾、残疾对儿童家庭的影响。
临床怎么用
- 临床医生在家庭会议中讨论残疾时需注意语言选择，避免委婉语或有问题语言。
- 可将残疾相关话题纳入医学教育，并开发培训工具帮助儿科临床医生有效讨论残疾。
以上解读依据论文摘要（全文未开放获取或许可不允许翻译转载）。
原文
OBJECTIVE: To evaluate the language used to discuss a child's disability and understand themes related to its use. STUDY DESIGN: This descriptive qualitative study was embedded in a qualitative study examining family meeting dynamics and decision-making in pediatric and neonatal intensive care units. Family meetings involved an infant 1 year old or younger and were held to discuss neurologic prognosis or goals of care. We performed a secondary, post hoc analysis of family meeting content to characterize language used to discuss current and/or future disability. RESULTS: A total of 68 family meetings were screened; 45 (66%) included disability language. Disability was referenced by explicitly naming disability, sharing information about disability characteristics, and using problematic language. We identified 5 themes that further characterized disability language: (1) euphemisms for disability, (2) invoking the healthy other, (3) the intersection between quality of life and disability, (4) using the medical model to contextualize disability, and (5) disability's impact on the child's family. CONCLUSIONS: The language used by family members and clinicians to discuss and contextualize disability provides important insight into how disability is addressed in pediatric and neonatal intensive care units. These findings emphasize the importance of including topics related to disability in medical education and can inform further work to develop training tools to aid pediatric clinicians in discussing disability effectively.
引用
- Sutyla RF, Young KA, Dhar S, et al. Talking About Future Disability: Qualitative Analysis of Family Meetings in Neonatal and Pediatric Intensive Care Units. J Pediatr. 2026. PMID: 42190900. doi:10.1016/j.jpeds.2026.115160
供执业医师工作参考，不替代临床判断；数值与分级以指南原文为准。