鼻咽癌患者对症状负担、情感体验及未满足需求的回顾性视角：一项定性研究

文献信息

中文摘要

目的： 探讨中国三级医疗环境中，成年鼻咽癌（NPC）患者如何回顾性描述其在诊断、积极治疗和居家康复阶段的躯体症状、情感体验及未满足的支持性照护需求。
方法： 本回顾性、横断面定性描述研究遵循定性研究统一报告标准。于2026年4月至5月期间，从中国中部一家三级医院目的性抽取13例经病理确诊的NPC患者（7例男性、6例女性；年龄28-64岁）。每位参与者完成一次30-45分钟的半结构化面对面访谈，回顾诊断、积极治疗和居家康复阶段的经历。招募持续至连续三次访谈未产生新的编码、亚主题或情境信息。数据采用Colaizzi七步法并借助NVivo 15.0进行分析。主题依据Corbin和Strauss的慢性病轨迹框架，以患者旅程图形式组织。
结果： 三个主题和九个亚主题描述了不同阶段特有的经历。在诊断阶段，参与者报告了对早期症状的误判、诊断带来的震惊、角色中断以及未满足的信息需求。在积极治疗期间，并发的口腔黏膜炎、口干症、吞咽困难、疲乏、身体意象担忧以及夜间支持可及性降低，共同导致了显著痛苦。在居家康复阶段，持续症状、对康复的不确定性、恢复日常角色的困难以及对癌症复发的恐惧仍然突出，尽管部分参与者也描述了重新投入有价值活动的情况。
结论： 参与者的回顾性叙述识别出诊断时、积极治疗期间及出院后各阶段特有的支持性照护缺口。研究结果支持结构化的诊断沟通、对并发症状的协调管理并提供可及的夜间支持，以及包含康复指导和心理筛查的过渡期随访。由于本研究为单中心、每位参与者仅进行一次回顾性访谈，研究结果应被解释为定性综合，而非纵向或定量模式的证据。

英文摘要

OBJECTIVE: To explore how adults with nasopharyngeal carcinoma (NPC) retrospectively described physical symptoms, emotional experiences, and unmet supportive care needs across diagnosis, active treatment, and home recovery in a Chinese tertiary-care setting.
METHODS: This retrospective, cross-sectional qualitative descriptive study followed the Consolidated Criteria for Reporting Qualitative Research. A purposive sample of 13 patients with pathologically confirmed NPC (7 men and 6 women; aged 28-64 years) was recruited from a tertiary hospital in central China between April and May 2026. Each participant completed one semi-structured, face-to-face interview lasting 30-45 minutes and recalled experiences across diagnosis, active treatment, and home recovery. Recruitment continued until three consecutive interviews yielded no new codes, subthemes, or contextual information. Data were analyzed using Colaizzi's seven-step procedure with NVivo 15.0. The themes were organized in a Patient Journey Map informed by Corbin and Strauss's Chronic Illness Trajectory Framework.
RESULTS: Three themes and nine subthemes described distinct phase-specific experiences. At diagnosis, participants reported misattribution of early symptoms, diagnostic shock, role disruption, and unmet information needs. During active treatment, co-occurring oral mucositis, xerostomia, dysphagia, fatigue, body-image concerns, and reduced access to support at night contributed to substantial distress. During home recovery, persistent symptoms, uncertainty about rehabilitation, difficulty resuming daily roles, and fear of cancer recurrence remained prominent, although some participants also described renewed engagement in valued activities.
CONCLUSION: Participants' retrospective accounts identified phase-specific supportive-care gaps at diagnosis, during active treatment, and after discharge. The findings support structured diagnostic communication, coordinated management of co-occurring symptoms with accessible out-of-hours support, and transitional follow-up that includes rehabilitation guidance and psychological screening. Because the study used one retrospective interview per participant at a single center, the findings should be interpreted as a qualitative synthesis rather than evidence of a longitudinal or quantitative pattern.