【作者简介】刘 丹，香港大学

【文章来源】《社会学评论》2026年第1期

【内容提要】儿童疾病照护超越了身体照料，需兼顾儿童成长发展。本文基于对唇腭裂儿童照护的田野调查，探讨了以实现“正常生活”为目标的照护实践。研究发现，医务人员、母亲和孩子均通过展演不断重构照护脚本。医疗情景下，医务人员以行动传递对唇腭裂的接纳态度，重塑家庭对疾病的认知，奠定家庭展演的基调。进入家庭情景后，作为核心照护者的母亲展演“平常心”，一边将疾病“寻常化”，一边管理自我情感以维系家庭关系。患儿则出于情感回馈参与共演，与家人共同塑造并维持对“正常生活”的认同。对这种“展演正常”的照护实践的分析，将戈夫曼的理论拓展至长期的亲密互动场域，为理解疾病照护中的动态互动、情感面向以及行动伦理提供了新的路径。

【关键词】展演 / 照护 / 唇腭裂 / 正常化 / 互动

【全文链接】http://src.ruc.edu.cn/CN/Y2026/V14/I1/213

Performances in the Care Practice: Shaping a “Normal Life”for Children with Cleft Lip and/or Palate

Abstract: The care of children with medical conditions extends beyond physical care to encompass their developmental needs. Based on fieldwork and interviews, this article explores care practices of cleft lip and/or palate (CLP) surrounding the goal of“normal life”. It reveals that in both medical and familial contexts, healthcare providers, mothers, and children construct care scripts through performance.Healthcare staff perform acceptant attitudes to reshape families’understanding of the illness, which establishes the foundation of performance for family care. As primary caregivers, mothers perform“pingchangxin,”which involves two key dimensions: normalizing body defects and regulating their emotional expressions to coordinate family networks. Meanwhile, children participate in this co-performance, collectively shaping and maintaining a shared sense of“normal life”with their families. This practice of“performing normality”extends Goffman’s framework into the context of long-term, intimate care, offering a new perspective for understanding dynamic, affective, and ethical dimensions of care work.