目的了解先天性肛门闭锁患儿照顾者病耻感的真实体验，为临床制订干预方案提供参考。 方法采用描述性质性研究，以目的抽样法选取广东省某三级甲等儿童医院先天性肛门闭锁患儿照顾者20名为研究对象，基于旅程地图构建访谈提纲并对其开展半结构访谈。根据Colaizzi分析法对访谈资料整理分析。 结果被访谈的20名患儿照顾者会经历4个旅程阶段（筛查诊断期、围术期、居家照护期、康复随访期），病耻感可划分为认知、情感及行为3大维度与17个主题（感知歧视、自我污名、人际疏离、认知偏差、隐瞒疾病、掩饰体征、抑郁情绪等）；以旅程阶段为横轴，认知、情感及行为为纵轴，绘制先天性肛门闭锁患儿照顾者病耻感旅程地图。 结论先天性肛门闭锁患儿照顾者病耻感呈动态变化，提示临床应分阶段关注照顾者病耻感并开展针对性评估及干预。

Objective To explore the true experience of stigma among caregivers of children with congenital anal atresia,and to provide a reference for targeted clinical intervention plans.Methods A descriptive qualitative research was adopted and 20 caregivers of children with congenital anal atresia in a tertiary A children’s hospital in Guangdong Province were selected by the purposive sampling.Semi-structured interviews were conducted with an interview outline based on the journey map.The interview data were analyzed using Colaizzi’s method.Results The 20 interviewed caregivers of children with this disease went through 4 journey stages,namely screening and diagnosis period,perioperative period, home care period,and rehabilitation follow-up period.The stigma can be classified into 3 dimensions of cognitive,affective and behavioral dimensions with 17 themes,namely perceived discrimination,self-stigmatization,interpersonal alienation,cognitive bias,concealment of disease,masking of signs,depression,etc.The journey map was constructed with stage of journey as the horizontal axis,while cognitive,affective,and behavioral as the vertical axis.Conclusions Caregivers’ experiences of stigma in children with congenital anal atresia shows dynamic changes,suggesting that clinical practice should pay attention to the stigma of caregivers at different stages and carry out targeted assessment and intervention.

R473.72；R471

广东省教育科学规划课题高等教育专项（2024G XJK321）；广东省本科高校教学质量与教学改革工程项目（粤教高函[2024]30号）