Instrumental support is critical for patients and family caregivers facing life-threatening illnesses, injuries, or chronic conditions (e.g., cancer). We partner with CaringBridge.org—a prominent online health community for journaling about health crises—to conduct a study of instrumental support in the following two phases: a content analysis of 641 journal updates; and a survey of 991 users. Quantitative results show that: (1) patients and family caregivers prefer to receive different types of support than their care networks prefer to provide; (2) people generally have more trust in their closest social connections than acquaintances or businesses to provide instrumental support; and (3) users rate “prayer support” as the most important support category to them. Building on these results, we discuss design implications to accommodate divergent preferences and to expand instrumental support networks. We also discuss the need for future work to empower family caregivers and to support spirituality, an understudied topic in HCI.

中文翻译：

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“我不能一个人做这一切”

工具性支持对于面临危及生命的疾病、伤害或慢性病（例如癌症）的患者和家庭护理人员至关重要。我们与 CaringBridge.org（一个著名的健康危机在线健康社区）合作，在以下两个阶段进行工具支持研究：对 641 份期刊更新的内容分析；以及对 991 位用户的调查。定量结果表明：（1）患者和家庭照顾者更愿意接受与其护理网络愿意提供的不同类型的支持；(2) 人们通常比熟人或企业更信任他们最亲密的社会关系，以提供工具性支持；(3) 用户将“祷告支持”列为最重要的支持类别。基于这些结果，我们讨论了设计含义以适应不同的偏好并扩大工具支持网络。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，这是 HCI 中一个未被充分研究的话题。