Nurturing health-related online support groups: Exploring the experiences of patient moderators
Nurturing health-related online support groups: Exploring the experiences of patient moderators
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DOI：
10.1016/j.chb.2013.02.003
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发表时间：
2013-07-01
影响因子：
9.9
通讯作者：
Shaw, Rachel L.
中科院分区：
文献类型：
--
作者：
Coulson, Neil S.;Shaw, Rachel L.
本研究的目的是检查在一个多样化的和地理范围广泛的在线支持小组的主持人的意见，他们的主持人的经验，并探讨个人利益以及所涉及的挑战。33名患者主持人完成了一份在线问卷，其中包括一系列开放式问题。专题分析确定了三个专题：涌现、赋权、培育。几位主持人宣布了他们自己的诊断，对一些人来说，能够分享个人见解促使他们建立了小组，并反过来提供了验证。他们通过帮助他人而获得力量，并通过访问“公共大脑”了解更多有关病情的信息。一些人认为，该组织帮助患者获得医疗服务，并帮助他们与医疗专业人员沟通，而另一些人则担心他们变得过度依赖。主持人描述了需要培养他们的小组，以确保它为成员提供一个安全的空间。明确的参与规则、信任、组织技能、同情心和善良被认为至关重要。患者主持的在线支持小组可以成功地开发和促进，并可以为小组成员和主持人授权。(c)2013爱思唯尔有限公司保留所有权利。
The aim of this study was to examine the views of moderators across a diverse and geographically broad range of online support groups about their moderator experiences and to explore both the personal benefits as well as challenges involved. Thirty-three patient moderators completed an online questionnaire which included a series of open-ended questions. Thematic analysis identified three themes: emergence, empowerment, nurturing. Several moderators declared their own diagnosis and for some, being able to share personal insights motivated them to establish the group and in turn offered validation. They felt empowered by helping others and learned more about the condition through accessing the "communal brain". Some felt the group aided patients' access to health services and their ability to communicate with health professionals while others worried about them becoming over-dependent. Moderators described needing to nurture their group to ensure it offered a safe space for members. Clear rules of engagement, trust, organisation skills, compassion and kindness were considered essential. Patient moderated online support groups can be successfully developed and facilitated and can be empowering for both the group member and moderator alike. (c) 2013 Elsevier Ltd. All rights reserved.