"i Cannot Do All of This Alone": Exploring instrumental and prayer support in online health communities

C. Estelle Smith, Zachary Levonian, Haiwei Ma, Robert Giaquinto, Gemma Lein-Mcdonough, Zixuan Li, Susan O'Conner-Von, Svetlana Yarosh

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
Article number38
JournalACM Transactions on Computer-Human Interaction
Volume27
Issue number5
DOIs
StatePublished - Oct 2020

Bibliographical note

Funding Information:
The first author was supported by the Graduate Assistance in Areas of National Need Fellowship. Authors’ addresses: C. E. Smith, Z. Levonian, H. Ma, R. Giaquinto, Z. Li, and S. Yarosh, GroupLens Research, Department of Computer Science & Engineering, University of Minnesota, 4-192 Keller Hall, 200 Union Street SE, Minneapolis, MN 55455; emails: {smit3694, levon003, maxxx979, smit7982, lixx4110, lana}@umn.edu; G. Lein-Mcdonough, Mathematics, Computing, and Statistics Division, Simmons University, 300 The Fenway, Boston, MA 02115; email: gemmaleinmcdonough@gmail.com; S. O’Conner-Von, Earl E. Bakken Center for Spirituality & Healing, University of Minnesota, 420 Delaware St SE c592, Minneapolis, MN 55455; email: ocon0025@umn.edu. Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for components of this work owned by others than the author(s) must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. Request permissions from permissions@acm.org. © 2020 Copyright held by the owner/author(s). Publication rights licensed to ACM. 1073-0516/2020/08-ART38 $15.00 https://doi.org/10.1145/3402855

Publisher Copyright:
© 2020 ACM.

Copyright:
Copyright 2020 Elsevier B.V., All rights reserved.

Keywords

  • CaringBridge
  • Online health communities
  • cancer
  • caregiver
  • emotional support
  • friendsourcing
  • health
  • informational support
  • instrumental support
  • patient
  • prayer support
  • sharing economy
  • social support

Fingerprint Dive into the research topics of '"i Cannot Do All of This Alone": Exploring instrumental and prayer support in online health communities'. Together they form a unique fingerprint.

Cite this