How cancer survivors provide support on cancer-related Internet mailing lists.
How cancer survivors provide support on cancer-related Internet mailing lists.
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DOI：
10.2196/jmir.9.2.e12
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发表时间：
2007-05-14
影响因子：
7.4
通讯作者：
Rimer BK
中科院分区：
文献类型：
--
作者：
Meier A;Lyons EJ;Frydman G;Forlenza M;Rimer BK
互联网邮件列表是癌症幸存者寻找信息和支持的重要且日益普遍的方式。大多数关于这些邮件列表的研究都调查了一种癌症的列表，最常见的是乳腺癌。关于从乳腺癌列表中吸取的经验教训是否适用于其他癌症，我们知之甚少。 这项研究的目的是比较10个互联网癌症相关邮件列表的结构特征，并确定癌症幸存者提供支持的过程。 我们研究了由癌症在线资源协会（ACOR）主办的10个癌症邮件列表在五个月内发送的9%的电子邮件信息的系统样本。内容分析被用来比较名单的结构特点，包括参与率和成员作为幸存者或照顾者的身份。我们使用主题分析来检查列表成员通过其消息文本提供的支持类型。 内容分析表明，名单成员的特点和订户参与率在名单中各不相同。专题分析显示，很少有“离题”的讨论。来自名单所有者的反馈表明，他们积极地在他们的名单上建立适当的沟通模式，并努力保持讨论的文明和重点。在所有名单中，成员提供支助的频率远远高于他们要求支助的频率;幸存者比照顾者更有可能提供支助而不是要求支助。幸存者信息中最常见的主题是关于治疗信息和如何与医疗保健提供者沟通。虽然情感支持的表达不如信息支持常见，但它们出现在所有列表中。许多包含疾病或治疗叙述的信息并没有特别要求帮助，而是通过安慰列表中的人来提供情感支持，让他们相信他们并不孤单。幸存者的情感支持的明确表达往往是鼓励积极应对的信息。这些信息还为残疾人提供了机会，使他们能够发挥增强个人能力的“帮助者”作用，支持自尊。 许多癌症幸存者使用互联网寻求信息和情感支持。在10个不同癌症的列表中，信息支持是主要的沟通方式。我们的发现，强调信息支持是在大多数以前的文献，它集中在情感上的支持。我们发现，最常见的支持方式是提供技术信息和关于如何与医疗保健提供者沟通的明确建议。各个列表中信息和情感支持的主题和比例有所不同。我们之前对ACOR订阅者的调查显示，他们加入列表主要是为了寻求信息;这项定性研究表明，他们可以并且确实找到了他们所寻求的信息。他们也有机会扮演支持者的角色。
Internet mailing lists are an important and increasingly common way for cancer survivors to find information and support. Most studies of these mailing lists have investigated lists dedicated to one type of cancer, most often breast cancer. Little is known about whether the lessons learned from experiences with breast cancer lists apply to other cancers. The aim of the study was to compare the structural characteristics of 10 Internet cancer-related mailing lists and identify the processes by which cancer survivors provide support. We studied a systematic 9% sample of email messages sent over five months to 10 cancer mailing lists hosted by the Association of Cancer Online Resources (ACOR). Content analyses were used to compare the structural characteristics of the lists, including participation rates and members’ identities as survivors or caregivers. We used thematic analyses to examine the types of support that list members provided through their message texts. Content analyses showed that characteristics of list members and subscriber participation rates varied across the lists. Thematic analyses revealed very little “off topic” discussion. Feedback from listowners indicated that they actively modeled appropriate communication on their lists and worked to keep discussions civil and focused. In all lists, members offered support much more frequently than they requested it; survivors were somewhat more likely than caregivers to offer rather than to ask for support. The most common topics in survivors’ messages were about treatment information and how to communicate with health care providers. Although expressions of emotional support were less common than informational support, they appeared in all lists. Many messages that contained narratives of illness or treatment did not specifically ask for help but provided emotional support by reassuring listmates that they were not alone in their struggles with cancer. Survivors’ explicit expressions of emotional support tended to be messages that encouraged active coping. Such messages also provided senders with opportunities to assume personally empowering “helper” roles that supported self-esteem. Many cancer survivors use the Internet to seek informational and emotional support. Across 10 lists for different cancers, informational support was the main communication style. Our finding of an emphasis on informational support is in contrast to most prior literature, which has focused on emotional support. We found the most common expressions of support were offers of technical information and explicit advice about how to communicate with health care providers. Topics and proportions of informational and emotional support differed across the lists. Our previous surveys of ACOR subscribers showed that they join the lists primarily to seek information; this qualitative study shows that they can and do find what they seek. They also find opportunities to play rewarding roles as support givers.
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影响因子：
2.8
作者：
Bass, DM;McClendon, MJ;McCarthy, C
通讯作者：
McCarthy, C
影响因子：
16.4
作者：
Kraut, R;Olson, J;Couper, M
通讯作者：
Couper, M
影响因子：
1.8
作者：
Kummervold, PE;Gammon, D;Rosenvinge, JH
通讯作者：
Rosenvinge, JH
影响因子：
3.1
作者：
Barrera, M;Glasgow, RE;Feil, EG
通讯作者：
Feil, EG
影响因子：
4.9
作者：
Butler, BS
通讯作者：
Butler, BS