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目的:调查炎症性肠病(IBD)患者在信息寻求经历中遇到的问题与感受,为我国IBD患者建立有效的信息支持途径提供依据。方法:采用质性研究中的现象学研究方法,深度访谈并分析20名炎症性肠病患者的信息寻求体验。结果:得出3个主题:信息需求面广量大;难以获得可靠、充足、有实际指导意义的信息;信息寻求过程中的情感体验。信息寻求过程中的情感体验主题中又得出3个次主题:信息寻求伴随焦虑与恐惧;对负面信息的逃避;对积极正能量信息的渴求。结论:我国的IBD患者需要建立专业、有效的精准化信息支持途径,以提供既精确、切题,又避免给患者带来负面情绪与压力的信息,最终达到改善疾病行为、提高生活质量的目的。
OBJECTIVE: To investigate the problems and feelings experienced by patients with inflammatory bowel disease (IBD) in seeking information and to provide evidences for establishing effective information support for IBD patients in our country. METHODS: Using phenomenological methods in qualitative research, we conducted in-depth interviews and analyzed the information of 20 inflammatory bowel disease patients seeking experience. Results: There are three main themes: a wide range of information needs; difficult to obtain reliable, adequate and practical guidance; emotional experience in the process of seeking information. There are three sub-topics in the topic of emotional experience in the process of seeking information: information seeking with anxiety and fear; evasion of negative information; and the desire for positive positive energy information. Conclusion: IBD patients in our country need to establish professional and effective way to support the accurate information, so as to provide accurate and relevant information and avoid negative emotions and stress to the patients. Finally, the aim of improving disease behavior and quality of life is achieved.