TY -非盟的范Uden-Kraan科妮莉亚F AU - Drossaert,康斯坦斯HC AU -塔阿尔,Erik盟——Seydel Erwin R AU - van de Laar集市AFJ PY - 2008 DA - 2008/06/30 TI -自我赋权潜水者之间的差异和海报在网上病人支持团体乔- J地中海互联网Res SP - e18六世- 10 - 2 KW -在线支持组KW -病人KW -潜水者KW -赋权KW -乳腺癌KW -纤维肌痛症KW -关节炎AB -背景:参加在线支持小组的患者在各方面都有好处。我们早期的研究结果表明，参与在线支持小组对参与者“被赋予权力”的感觉有深远的影响。然而，大多数在线患者支持小组的研究都集中在这些小组中通过发送帖子(海报)积极贡献的成员。到目前为止，对于“潜伏者”(即那些不积极参与发帖的人)的影响还知之甚少。目的:在本研究中，我们探讨了在线患者支持小组中的潜伏者是否与海报者获利相同。方法:我们使用搜索引擎谷歌在互联网上搜索，以确定所有荷兰乳腺癌、纤维肌痛和关节炎患者的在线支持小组。19个小组的所有者发出了完成在线调查的邀请。在在线问卷中，我们询问了有关人口统计和健康特征、在线支持小组的使用和满意度、授权过程和授权结果的问题。528人完成了在线问卷调查，其中109人(21%)认为自己是潜伏者。 Results: Lurkers (mean age 47 years) were slightly older than active participants (mean age 43 years, P = .002), had a shorter disease history (time since diagnosis 3.7 years vs 5.4 years, P = .001), and reported lower mental well-being (SF 12 subscore 37.7 vs 40.5, P = .004). No significant differences were found in other demographic variables. Posters indicated visiting the online support groups significantly more often for social reasons, such as curiosity about how other members were doing, to enjoy themselves, as a part of their daily routine (all P < .001), and because other members expected them to be there (P = .003). Lurkers and posters did not differ in their information-related reasons for visiting the online support group. Lurkers were significantly less satisfied with the online support group compared to posters (P < .001). With regard to empowering processes such as “exchanging information” and “finding recognition,” lurkers scored significantly lower than posters. However, lurkers did not differ significantly from posters with regard to most empowering outcomes, such as “being better informed,” “feeling more confident in the relationship with their physician,” “improved acceptance of the disease,” “feeling more confident about the treatment,” “enhanced self-esteem,” and “increased optimism and control.” The exception was “enhanced social well-being,” which scored significantly lower for lurkers compared to posters (P < .001). Conclusion: Our study revealed that participation in an online support group had the same profound effect on lurkers’ self-reported feelings of being empowered in several areas as it had on posters. Apparently, reading in itself is sufficient to profit from participation in an online patient support group. SN - 1438-8871 UR - //www.mybigtv.com/2008/2/e18/ UR - https://doi.org/10.2196/jmir.992 UR - http://www.ncbi.nlm.nih.gov/pubmed/18653442 DO - 10.2196/jmir.992 ID - info:doi/10.2196/jmir.992 ER -