描绘儿童腺样体肥大的未满足需求之旅：照护者的视角

文献信息

中文摘要

目的： 系统性地描绘腺样体肥大患儿的就诊历程，并识别其照护者未满足的需求。
方法： 开展了一项定性研究，对25名3-9岁儿童的照护者进行了深度访谈。腺样体肥大经鼻内镜检查（阻塞≥70%）和/或多导睡眠监测（OAHI>1次/小时）确诊。通过反思性主题分析对数据进行分析，以构建全面的就诊历程图。情感曲线是根据照护者叙述定性推导得出的，作为各照护阶段情感轨迹的启发式可视化呈现，而非定量测量。
结果： 分析揭示了两种不同的情感轨迹：手术路径的照护者因支持真空而经历了出院后危机，而保守治疗路径的照护者则因疗效不确定性而承受持续焦虑。我们识别出路径特异性需求（出院后支持、疗效反馈）和跨路径共性需求（主动提供信息、整体习惯指导）。
结论： 该就诊历程图为制定针对性干预措施提供了循证框架，可为照护者教育、出院规划、随访策略和多学科照护路径提供参考，从而解决关键的系统性缺陷，并提升儿童腺样体肥大以患者为中心的照护。

英文摘要

OBJECTIVE: To systematically map the patient journey and identify unmet needs in children with adenoid hypertrophy and their caregivers.
METHODS: A qualitative study using in-depth interviews with 25 caregivers of children aged 3-9 years was conducted. Adenoid hypertrophy was confirmed by nasoendoscopy (≥70% obstruction) and/or polysomnography (OAHI >1 event/hour). Data were analyzed through reflexive thematic analysis to construct a comprehensive journey map. The emotional curve was derived qualitatively from caregiver narratives as a heuristic visualization of emotional trajectories across care stages, not as a quantitative measure.
RESULTS: Analysis revealed two distinct emotional trajectories: surgical path caregivers experienced a post-discharge crisis due to support vacuum, while conservative path caregivers endured persistent anxiety from efficacy uncertainty. We identified both pathway-specific needs (post-discharge support, efficacy feedback) and cross-cutting needs (proactive information, holistic habit guidance).
CONCLUSION: This journey mapping provides an evidence-based framework for developing targeted interventions to inform caregiver education, discharge planning, follow-up strategies, and multidisciplinary care pathways, addressing critical system failures and enhancing patient-centered care in pediatric adenoid hypertrophy.