A longitudinal qualitative study on self-management experiences and needs of patients with urinary incontinence after orthotopic neobladder surgery

doi:10.3761/j.issn.0254-1769.2026.02.008

Abstract

Abstract:

Objective Based on the patient journey map，this study longitudinally tracks the staged self-management and needs of patients with urinary incontinence following orthotopic neobladder surgery to provide a foundation for developing phased and individualized nursing intervention programs. Methods A longitudinal qualitative research approach was adopted. A total of 16 bladder cancer patients who underwent orthotopic neobladder（ONB） surgery in the Department of Urology at a tertiary hospital in Nanjing between April and June 2024 were recruited by purposive sampling. Semi-structured interviews were conducted with the patients at 1 month （T1），3 months（T2），and 6 months（T3） postoperatively. Data were analyzed by content analysis，and patient journey maps were constructed. Results Using the 3 postoperative rehabilitation phases-recovery（1-3 months），adaptation（4-6 months），and stabilization（>6 months） as the timeline，patients’ self-management experiences and needs were systematically summarized in terms of tasks，emotions，and pain points. A total of 20 themes were identified，including adaptive self-training for the neobladder，systematic learning of self-care skills，anxiety and confidence crises triggered by urinary incontinence，regret over surgical decisions and doubts about outcomes due to symptom recurrence，imbalance in physical and psychological adaptation，multidimensional lifestyle restrictions，and information overload with a disconnect between knowledge and practice. Patient journey maps were constructed accordingly. Conclusion Self-management of urinary incontinence following ONB surgery is both phased and long-term in nature. Healthcare professionals should provide timely and appropriate phased comprehensive nursing interventions based on patients’ dynamic experiences and core needs at different stages to optimize rehabilitation outcomes.

Key words: Orthotopic Neobladder Surgery, Urinary Incontinence, Self-Management, Patient Journey Mapping, Longitudinal Qualitative Study, Nursing Care

摘要：

目的基于患者旅程地图，纵向追踪原位新膀胱术后尿失禁患者自我管理的阶段性体验及需求，为制订分阶段的护理干预方案提供依据。方法采用纵向质性研究方法，通过目的抽样选取2024年4—6月在南京市某三级甲等医院泌尿外科行原位新膀胱术的16例膀胱癌患者作为研究对象。于术后1、3、6个月对其进行半结构化访谈。采用内容分析法进行资料分析并绘制患者旅程地图。结果以术后恢复期（1~3个月）、适应期（4~6个月）和稳定期（>6个月） 3个康复阶段为时间轴，从任务、情绪和痛点3个维度归纳、提炼出患者的自我管理体验及需求，形成包括新膀胱适应性自主训练、自护技能系统性学习、排尿失控触发焦虑与信心危机、症状反复激发手术决策后悔与效果质疑、身心适应负荷失调、生活方式多维受限、信息过载与实操脱节等20个主题，并形成旅程地图。结论原位新膀胱术后尿失禁患者的自我管理具有阶段性和长期性，医护人员应依据患者不同阶段的动态体验与核心需求，提供即时、适配的分阶段综合护理干预，以优化患者的康复结局。

关键词: 原位新膀胱术, 尿失禁, 自我管理, 患者旅程地图, 纵向质性研究, 护理

DING Jiarong, CHEN Hui, WANG Xuerui, SUN Xiaoling, ZHANG Yin. A longitudinal qualitative study on self-management experiences and needs of patients with urinary incontinence after orthotopic neobladder surgery[J]. Chinese Journal of Nursing, 2026, 61(2): 205-212.

丁佳蓉, 陈慧, 王雪瑞, 孙小玲, 张银. 原位新膀胱术后尿失禁患者自我管理体验及需求的纵向质性研究[J]. 中华护理杂志, 2026, 61(2): 205-212.

Figures/Tables 2

References 24

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