2020/05/24 by C. Estelle Smith, Smith, C. Estelle, Zachary Levonian +13 · 1 citation
Arts and Humanities · Health Professions · Social Sciences · #FOS: Computer and information sciences #Health Literacy and Information Accessibility #Human-Computer Interaction (cs.HC) #Media, Religion, Digital Communication #Religion, Spirituality, and Psychology
paper · pdf · doi:10.48550/arxiv.2005.11884
openalex publication_date 2020/05/24 · openalex created_date 2022/07/26 · openalex updated_date 2026/07/28
Online Health Communities (OHCs) are known to provide substantial emotional\nand informational support to patients and family caregivers facing\nlife-threatening diagnoses like cancer and other illnesses, injuries, or\nchronic conditions. Yet little work explores how OHCs facilitate other vital\nforms of social support, especially instrumental support. We partner with\nCaringBridge.org---a prominent OHC for journaling about health crises---to\ncomplete a two-phase study focused on instrumental support. Phase one involves\na content analysis of 641 CaringBridge updates. Phase two is a survey of 991\nCaringBridge users. Results show that patients and family caregivers diverge\nfrom their support networks in their preferences for specific instrumental\nsupport types. Furthermore, ``prayer support'' emerged as the most prominent\nsupport category across both phases. We discuss design implications to\naccommodate divergent preferences and to expand the instrumental support\nnetwork. We also discuss the need for future work to empower family caregivers\nand to support spirituality.\n