目的：了解克罗恩病患者自我管理的现状，据此分析存在的问题，为克罗恩病患者获取有效信息及支持提供依据。方法：采用质性研究中的现象学研究方法，访谈、分析10例克罗恩病患者的自我管理行为。结果：（1） 患者自我管理认知狭隘，表现为：疾病认知程度低导致病情反复或加重；疾病初期饮食管理依从性差；部分患者服药依从性差；重视病情的自我监测，但部分患者不能定期复查；重视正确的生活方式，但内容不够全面；逐渐接受并正视疾病，但存在情感波动；依赖家庭支持，社会支持薄弱。（2） 患者信息来源渠道狭窄。结论：克罗恩病患者对信息的需求迫切、内容广，但目前患者信息来源狭窄，难以获得充足、系统、有效的指导信息。

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