Shoebotham Amie, Coulson Neil S
Division of Rehabilitation & Ageing, School of Medicine, University of Nottingham, Nottingham, United Kingdom.
J Med Internet Res. 2016 May 9;18(5):e109. doi: 10.2196/jmir.5548.
The Internet has provided women living with endometriosis new opportunities to seek support online. Online support groups may provide a range of therapeutic affordances that may benefit these women.
To examine the presence of therapeutic affordances as perceived by women who use endometriosis online support groups.
Sixty-nine women (aged 19-50 years, mean 34.2 years; 65.2% (45/69) United Kingdom, 21.7% (15/69) United States) participated in a Web-based interview exploring online support group use. Participants had been using online support groups for an average of 2 years and 4 months (range = 1 month to 14 years, 9 months). Responses were analyzed using inductive thematic analysis.
The analysis revealed 4 therapeutic affordances related to online support group use: (1) "connection," that is, the ability to connect in order to support each other, exchange advice, and to try to overcome feelings of loneliness; (2) "exploration," that is, the ability to look for information, learn, and bolster their knowledge; (3) "narration," that is, the ability to share their experiences, as well as read about the experiences of others; and (4) "self-presentation," that is, the ability to manage how they present themselves online. The associated outcomes of use were predominantly positive, such as reassurance and improved coping. However, a number of negative aspects were revealed including the following: concerns about the accuracy of information, arguments between members, overreliance on the group, becoming upset by negative experiences or good news items, and confidentiality of personal information.
Our findings support the previously proposed SCENA (Self-presentation, Connection, Exploration, Narration, and Adaptation) model and reveal a range of positive aspects that may benefit members, particularly in relation to reassurance and coping. However, negative aspects need to be addressed to maximize the potential benefit of support groups. Some of these can be addressed relatively easily through making privacy policies clearer, including health professionals to moderate content, and structuring forums to encourage the sharing of positive stories.
互联网为患有子宫内膜异位症的女性提供了在网上寻求支持的新机会。在线支持小组可能提供一系列具有治疗作用的便利条件，这些条件可能使这些女性受益。
研究使用子宫内膜异位症在线支持小组的女性所感知到的治疗便利条件的存在情况。
69名女性（年龄在19至50岁之间，平均34.2岁；65.2%（45/69）来自英国，21.7%（15/69）来自美国）参与了一项基于网络的访谈，探讨在线支持小组的使用情况。参与者使用在线支持小组的平均时间为2年4个月（范围为1个月至14年9个月）。使用归纳主题分析法对回复进行分析。
分析揭示了与在线支持小组使用相关的4种治疗便利条件：（1）“联系”，即相互联系以相互支持、交流建议并试图克服孤独感的能力；（2）“探索”，即寻找信息、学习并增强知识的能力；（3）“叙述”，即分享自身经历以及阅读他人经历的能力；（4） “自我呈现”，即管理自己在网上呈现方式的能力。使用的相关结果主要是积极的，如安心和改善应对能力。然而，也揭示了一些消极方面，包括：对信息准确性的担忧、成员之间的争论、对小组的过度依赖、因负面经历或好消息而心烦意乱以及个人信息的保密性。
我们的研究结果支持先前提出的SCENA（自我呈现、联系、探索、叙述和适应）模型，并揭示了一系列可能使成员受益的积极方面，特别是在安心和应对方面。然而，需要解决消极方面，以最大限度地发挥支持小组的潜在益处。其中一些可以通过更明确隐私政策、让健康专业人员参与内容审核以及构建论坛以鼓励分享积极故事等方式相对轻松地解决。
