@ 1438-8871 %I Gunther Eysenbach %V 7% N 3% P e32 %T新订阅用户如何使用癌症相关在线邮件列表%A Rimer,Barbara K %A Lyons,Elizabeth J %A Ribisl,Kurt M %A Bowling,J Michael %A Golin,Carol E %A Forlenza,Michael J %A Meier,Andrea +北卡罗来纳大学教堂山分校公共卫生学院，170 Rosenau，教堂山，NC 27599-7295, USA， +1 919 966 3215，brimer@email.unc.edu %K互联网%K癌症%K患者%K幸存者%K在线社区%K邮件列表%K在线支持团体，listservs %D 2005 %7 1.7.2005 %9原始论文%J J医学互联网资源%G英语%X背景:在线癌症相关支持是一种有待研究的资源，可能在癌症患者及其家属的信息寻求、护理和支持方面发挥重要作用。仅在美国就有超过980万癌症幸存者(定义为任何患有癌症的人)，而且这个数字在全球范围内还在增长，了解他们如何在需要的时候，以适合他们的形式和方式，寻求和使用在线资源来获得他们所需的信息是很重要的。这些是美国国家癌症研究所的癌症传播目标。目的:我们的目的是:(1)介绍在线邮件列表和电子支持小组的背景信息，(2)描述健康社区(HeC)研究的基本原理和方法，(3)介绍癌症相关邮件列表新订阅者的初步基线数据。特别地，我们将描述订阅者对邮件列表的使用、使用它们的原因，以及他们在加入列表后不久参与的反应。方法:从2004年4月到8月，我们邀请10个癌症在线资源协会邮件列表的所有新订阅者完成基于网络的调查。我们分析了受访者的基线数据，以检查他们对癌症相关邮件列表的看法，并描述癌症患者和幸存者在加入这些列表后不久是如何使用这些列表的。结果:累计向1368个新的邮件列表订阅者发送电子邮件邀请;在指定时间内完成293项网上调查(回应率21.4%)。 Most respondents were over age 50 (n = 203, 72%), white (n = 286, 98%), college graduates (n = 161, 55%), and had health insurance (n = 283, 97%). About 41% (n = 116) of new subscribers reported spending 1 to 3 hours per day reading and responding to list messages. They used the mailing lists for several reasons. Among the most frequently reported, 62% (n = 179) strongly agreed they used mailing lists to obtain information on how to deal with cancer, 42% (n = 121) strongly agreed they used mailing lists for support, and 37% (n = 109) strongly agreed that they were on the mailing lists to help others. Smaller proportions of new subscribers strongly agreed that others on the mailing lists had similar cancer experiences (n = 23, 9%), that they could relate to the experiences of others on the lists (n = 66, 27%), and that others on the list gave them good ideas about how to cope with cancer (n = 66, 27%). Conclusions: Cancer-related online mailing lists appear to be an important resource, especially for information seeking but also for support of cancer survivors. These were the primary motivators most members reported for joining mailing lists. The modest proportion of subscribers who strongly agreed that they could relate to others' cancer experiences (as well as similar responses to other process questions) is undoubtedly due at least in part to the short duration that these subscribers were involved with the mailing lists. Emerging data, including our own, suggest that mailing lists are perhaps under-used by minority patients/survivors. These preliminary data add to a growing body of research on health-related online communities, of which online mailing lists are one variant. %M 15998623 %R 10.2196/jmir.7.3.e32 %U //www.mybigtv.com/2005/3/e32/ %U https://doi.org/10.2196/jmir.7.3.e32 %U http://www.ncbi.nlm.nih.gov/pubmed/15998623