论文标题
“我不能独自完成所有这些”：探索在线健康社区中的工具和祈祷支持
"I Cannot Do All of This Alone": Exploring Instrumental and Prayer Support in Online Health Communities
论文作者
论文摘要
众所周知，在线卫生社区（OHC）为面临威胁生命的诊断等癌症和其他疾病，伤害或慢性病的患者和家庭护理人员提供了大量的情感和信息支持。然而，很少的工作探讨了OHC如何促进其他重要的社会支持形式，尤其是工具支持。我们与CaringBridge.org合作---关于健康危机的重要OHC - 完成了一项针对工具支持的两阶段研究。第一阶段涉及641个Caringbridge更新的内容分析。第二阶段是对991个Caringbridge用户的调查。结果表明，患者和家庭护理人员对特定工具支持类型的偏好偏离了支持网络。此外，``祈祷支持''成为两个阶段中最突出的支持类别。我们讨论设计含义，以适应不同的偏好并扩展仪器支持网络。我们还讨论了未来工作以增强家庭照顾者并支持灵性的需求。
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.
