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Symptom Management Experiences of People Living With Crohn's Disease Through a Journey Map: A Qualitative Study
Yi Wang1, Yamei Chen1, Linjuan Xun1
1Nursing Department, Shanghai Tenth People's Hospital, Shanghai, China.
Aims And Objectives:
This study aimed to develop a journey map of symptom management for people living with Crohn's disease, identifying core needs and challenges across disease stages to inform personalized nursing interventions.
Background:
Crohn's disease is a chronic progressive inflammatory disorder with diverse symptoms, persistent psychological distress, and impaired social functioning. Nevertheless, few person-centered comprehensive symptom management pathways are based on real lived experiences.
Design:
This study employed an interpretive descriptive qualitative design in accordance with the COREQ guidelines for qualitative research reporting.
Methods:
An interpretive descriptive study was conducted among 22 individuals living with Crohn's disease from a tertiary hospital. Maximum variation sampling was used, with semi-structured interviews followed by six-stage thematic analysis. Themes were chronologically sorted via process mapping and visualized into a journey map synthesizing participants' longitudinal care experiences.
Results:
Based on participants' reconstructed illness trajectories, the journey was divided into three stages: screening and diagnosis (0-12 months), acute active phase (13-24 months), and remission maintenance phase (> 24 months), covering 32 core themes. Key challenges included misdiagnosis and role stress in the early stage, symptom burden and access barriers in the acute stage, and complacency and social integration issues during remission.
Conclusions:
Symptom management for people living with Crohn's disease shows stage-specific physical, psychological, and social dynamics. Journey mapping reveals gaps in full-cycle integrated care, indicating need for targeted precision pathways including health education, rapid clinical response, professional psychological support, and social reintegration interventions.
Relevance To Clinical Practice:
The visualized patient journey map can help clinicians, nurses, and healthcare managers optimize full-cycle care, improve symptom self-management, and enhance quality of life and treatment outcomes for people living with Crohn's disease.
Patient Or Public Contribution:
Participants took part in semi-structured interviews and contributed to data analysis and result interpretation. They were not involved in study design, manuscript drafting, or revision.
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