Seeking and sharing: why the pulmonary fibrosis community engages the web 2.0 environment.
Seeking and sharing: why the pulmonary fibrosis community engages the web 2.0 environment.
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DOI：
10.1186/s12890-016-0167-7
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发表时间：
2016-01-12
影响因子：
3.1
通讯作者：
Swigris JJ
中科院分区：
文献类型：
--
作者：
Albright K;Walker T;Baird S;Eres L;Farnsworth T;Fier K;Kervitsky D;Korn M;Lederer DJ;McCormick M;Steiner JF;Vierzba T;Wamboldt FS;Swigris JJ
肺纤维化（PF）是一种罕见的进行性疾病，在许多层面上影响患者及其亲人。我们试图更好地了解PF患者和他们的亲人（统称为“读者参与者”）的需求和兴趣，通过系统地分析他们与万维网（当前版本称为Web 2.0）的互动。数据收集从三个PF为重点的，互动的网站主办的医生，研究人员在PF的专业知识。所有的数据产生的读者参与者约10个月的下载，然后使用定性内容分析方法进行分析。PF专家发表了38篇博客文章，读者参与者发表了40篇论坛文章。博客收到了363条回复，论坛条目收到了108条来自读者参与者的回复。读者参与者主要使用这三个网站，以寻求信息或提供一个贡献的PF社区。寻求有关PF症状，诊断，预后，治疗，研究，病理生理学和疾病起源的信息;读者参与者还要求新的职位和研究请求，并寻求澄清现有的内容。贡献包括个人的叙述与PF的经验，活动或行为的描述，发现有助于PF症状，资源或信息PF，并支持其他PF患者的意见。PF患者及其亲人在这些以PF为重点的网站上参与Web 2.0环境，以满足他们的需求，更好地了解PF及其影响，并支持面临类似挑战的其他人。临床医生可能会发现，鼓励PF患者参与促进动态，双向信息共享的互联网论坛是有益的。本文的在线版本（doi：10.1186/s12890-016-0167-7）包含补充材料，可供授权用户使用。
Pulmonary fibrosis (PF) is a rare, progressive disease that affects patients and their loved ones on many levels. We sought to better understand the needs and interests of PF patients and their loved ones (collectively “reader-participants”) by systematically analyzing their engagement with the World Wide Web (the current version referred to as Web 2.0). Data were collected from three PF-focused, interactive websites hosted by physician-investigators with expertise in PF. All data generated by reader-participants for approximately 10 months were downloaded and then analyzed using qualitative content analysis methods. PF experts posted 38 blog entries and reader-participants posted 40 forum entries. Blogs received 363 responses, and forum entries received 108 responses from reader-participants. Reader-participants primarily used the three websites to seek information from or offer a contribution to the PF community. Information was sought about PF symptoms, diagnosis, prognosis, treatments, research, pathophysiology, and disease origin; reader-participants also made requests for new posts and pleas for research and sought clarification on existing content. Contributions included personal narratives about experiences with PF, descriptions of activities or behaviors found to be helpful with PF symptoms, resources or information about PF, and supportive comments to other PF sufferers. PF patients and their loved ones engage the Web 2.0 environment at these PF-focused sites to satisfy their needs to better understand PF and its impacts and to support others facing similar challenges. Clinicians may find it beneficial to encourage PF patients’ involvement in internet forums that foster dynamic, bi-directional information sharing. The online version of this article (doi:10.1186/s12890-016-0167-7) contains supplementary material, which is available to authorized users.