"I Cannot Do All of This Alone"

Abstract

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.