TY - JOUR AU - Nordfeldt, Sam AU - Hanberger, Lena AU - Berterö， Carina PY - 2010 DA - 2010/05/28 TI -患者和家长对Web 2.0糖尿病门户网站的看法——管理工具、生成器和看门人:定性研究乔- J地中海互联网Res SP - e17六世- 12 - 2 KW——Web 2.0 KW -电子健康KW -儿童慢性病KW - 1型糖尿病KW -自我保健KW -疾病管理KW -患者信息KW - apomediation KW -网络KW -社会媒体KW -学习KW -卫生保健专业人员KW -儿童KW——青少年KW -父母AB -背景:互联网经历了快速发展,对社会生活产生重大影响和沟通模式。1型糖尿病的现代管理要求患者获得持续的支持和学习机会。尽管Web 2.0资源可以提供这种支持，但很少有儿科诊所将其作为常规糖尿病护理的一部分提供。目的:我们旨在探索患者和家长对本地Web 2.0门户的态度，该门户为1型糖尿病的年轻患者和他们的父母量身定制，使用社交网络工具，如留言板和博客，本地生产的自我护理和治疗信息，以及交互式教学设备。在临床实践中寻找Web 2.0应用实现的机会和障碍。方法:参与者为16名母亲，3名父亲和5名年轻患者(年龄11-18岁;平均年龄为14岁)，每个人都写了一篇关于他们使用门户的经验的文章，而不管他们使用门户的频率和/或成功与否。提出了两个主要的指导性问题。对论文整体进行定性内容分析。 Results: Three main categories of portal users’ attitudes were found; we named them “the management tool,” “the generator,” and “the gatekeeper.” One category was related to the management tool functionality of the portal, and a wide range of concrete examples was found regarding useful facts and updates. Being enabled to search when necessary and find reliable information provided by local clinicians was regarded as a great advantage, facilitating a feeling of security and being in control. Finding answers to difficult-to-ask questions, questions portal users did not know they had before, and questions focusing on sensitive areas such as anxiety and fear, was also an important feature. A second category was related to the generator function in that visiting the portal could generate more information than expected, which could lead to increased use. Active message boards and chat rooms were found to have great value for enhancing mediation of third party peer-to-peer information. A certain level of active users from peer families and visible signs of their activity were considered necessary to attract returning users. A third category was related to the gatekeeper function of the password requirement, which created various access problems. This and other unsuccessful experiences caused users to drop the portal. A largely open portal was suggested to enhance use by those associated with the child with diabetes, such as school personnel, relatives, friends and others, and also by young users somewhat unwilling to self-identify with the disease. Conclusions: Web 2.0 services have great potential for supporting parents and patients with type 1 diabetes by enhancing their information retrieval and disease management. Well-developed services, such as this one, may generate continued use and should, therefore, be carefully maintained and updated by health care professionals who are alert and active on the site with new information and updates. Login procedures should be simple and minimized as much as possible. The education of clinical practitioners regarding the use of Web 2.0 resources needs more attention. SN - 1438-8871 UR - //www.mybigtv.com/2010/2/e17/ UR - https://doi.org/10.2196/jmir.1267 DO - 10.2196/jmir.1267 ID - info:doi/10.2196/jmir.1267 ER -