“我不能独自完成这一切”：探索在线健康社区的工具和祈祷支持
"I Cannot Do All of This Alone": Exploring Instrumental and Prayer Support in Online Health Communities
摘要：
众所周知，在线健康社区（OHC）为面临癌症和其他疾病，伤害或慢性病等危及生命的诊断的患者和家庭护理人员提供大量的情感和信息支持。然而，很少有工作探讨OHC如何促进其他重要形式的社会支持，特别是工具性支持。我们与CaringBridge.org（一个记录健康危机的著名OHC）合作，完成了一项两阶段的研究，重点是工具性支持。第一阶段涉及641个CaringBridge更新的内容分析。第二阶段是对991名CaringBridge用户的调查。结果表明，患者和家庭照顾者偏离他们的支持网络，在他们的偏好特定的工具支持类型。此外，"祈祷支持“成为两个阶段中最突出的支持类别。我们讨论设计的影响，以适应不同的偏好，并扩大工具的支持网络。我们还讨论了未来工作的必要性，以增强家庭照顾者的能力，并支持灵性。
英文摘要：
Online Health Communities (OHCs) are known to provide substantial emotional and informational support to patients and family caregivers facing life-threatening diagnoses like cancer and other illnesses, injuries, or chronic conditions. Yet little work explores how OHCs facilitate other vital forms of social support, especially instrumental support. We partner with CaringBridge.org---a prominent OHC for journaling about health crises---to complete a two-phase study focused on instrumental support. Phase one involves a content analysis of 641 CaringBridge updates. Phase two is a survey of 991 CaringBridge users. Results show that patients and family caregivers diverge from their support networks in their preferences for specific instrumental support types. Furthermore, ``prayer support'' emerged as the most prominent support category across both phases. We discuss design implications to accommodate divergent preferences and to expand the instrumental support network. We also discuss the need for future work to empower family caregivers and to support spirituality.
机构、总结、中文摘要均由AI分析而来，可能存在错误，请以论文正文为准。
