"I Cannot Do All of This Alone": Exploring Instrumental and Prayer Support in Online Health Communities
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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.
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