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一项关于克罗恩病青年患者的定性研究。

A qualitative study of youth living with Crohn disease.

作者信息

Lynch Teresa, Spence Deb

机构信息

Gastrointestinal Investigative Unit, Christchurch Hospital, Christchurch, New Zealand.

出版信息

Gastroenterol Nurs. 2008 May-Jun;31(3):224-30; quiz 231-2. doi: 10.1097/01.SGA.0000324114.01651.65.

Abstract

Little is known about what it is like to live in adolescence with a chronic inflammatory bowel disease. This article reports the findings of a small qualitative study that explored the experience of four New Zealand youth aged between 16 and 21 years, who had been recently diagnosed with Crohn disease. Semistructured interviews focused on discovering the youth' thoughts, feelings, and perceptions of living with this condition. Analysis of the transcribed data is presented thematically. The findings reveal stress as integral to living with Crohn disease. They illuminate the paradoxical relationship between fear and hope and provide insight into what helps and what hinders young people's ability to cope with the disease and its treatments. Collectively, these three themes describe the ways in which the lives of young adults are drastically and almost irreparably changed by Crohn disease. The findings contribute to the "promoting wellness" literature and will inform those who support the increasing number of young people living and coping with a chronic inflammatory bowel disease.

摘要

对于患有慢性炎症性肠病的青少年的生活状况,人们知之甚少。本文报告了一项小型定性研究的结果,该研究探讨了四名年龄在16至21岁之间、最近被诊断患有克罗恩病的新西兰年轻人的经历。半结构化访谈聚焦于了解这些年轻人对患有这种疾病的想法、感受和认知。对转录数据的分析采用了主题分析法。研究结果表明,压力是克罗恩病患者生活中不可或缺的一部分。这些结果揭示了恐惧与希望之间的矛盾关系,并深入了解了哪些因素有助于以及哪些因素阻碍了年轻人应对疾病及其治疗的能力。总体而言,这三个主题描述了克罗恩病如何极大地、几乎不可挽回地改变了年轻人的生活。这些研究结果为“促进健康”的文献做出了贡献,并将为那些支持越来越多患有慢性炎症性肠病并与之抗争的年轻人的人提供参考。

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