Jones Katherine, Baker Katherine, Tew Garry A, Naisby Jenni
Warwick Clinical Trials Unit, Warwick Medical School, University of Warwick, Coventry CV4 7AL, UK.
Department of Sport, Exercise and Rehabilitation, University of Northumbria at Newcastle, Newcastle Upon Tyne NE7 7YT, UK.
Crohns Colitis 360. 2025 Jan 16;7(1):otaf003. doi: 10.1093/crocol/otaf003. eCollection 2025 Jan.
Crohn's disease (CD) is a lifelong condition that poses unique challenges. This study reports findings from a person's perspective of living with CD to help enhance the understanding of an individual's specific care and support needs.
Semi-structured telephone interviews were conducted with a convenience sample of adults with Crohn's disease recruited from Newcastle Hospitals NHS Foundation Trust. Data were analyzed after data collection using thematic analysis.
Forty-one (68% female) participants aged 49.1 ± 12 years with a disease duration between 1 and 55 years were interviewed. Three overarching themes emerged, along with 12 subthemes: (1) reactions to presenting symptoms, emotions, and challenges at diagnosis; (2) reality of living with the condition, seeking information, decision making, psychological challenges, experiencing symptoms/complications during remission and the impact on social life, education, employment, and relationships; (3) Resilience involving emotional adaptations, strategies on self-management, social comparisons as a means of coping and barriers to resilience.
The results highlight the complex health journey and challenges faced by people living with Crohn's disease and provide health care professionals with a greater insight into the psychological challenges and emotional complexities of the condition to facilitate a more holistic approach to planning care.
克罗恩病（CD）是一种终身性疾病，带来了独特的挑战。本研究从患者的角度报告了患有克罗恩病的生活体验，以帮助增进对个体特定护理和支持需求的理解。
对从纽卡斯尔医院国民保健服务基金会信托招募的成年克罗恩病患者进行了便利抽样的半结构化电话访谈。数据收集后采用主题分析法进行分析。
共访谈了41名参与者（68%为女性），年龄49.1±12岁，病程1至55年。出现了三个总体主题以及12个子主题：（1）对出现症状、情绪及诊断时挑战的反应；（2）患病生活的现实情况，包括寻求信息、决策、心理挑战、缓解期出现症状/并发症及其对社会生活、教育、就业和人际关系的影响；（3）恢复力，涉及情绪适应、自我管理策略、作为应对手段的社会比较以及恢复力的障碍。
结果突出了克罗恩病患者所面临的复杂健康历程和挑战，并为医护人员提供了对该疾病心理挑战和情绪复杂性的更深入了解，以便在规划护理时采取更全面的方法。
