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

Authors:

C. Estelle Smith,

Zachary Levonian,

Robert Giaquinto,

Gemma Lein-Mcdonough,

Susan O’conner-Von,

Svetlana YaroshAuthors Info & Claims

ACM Transactions on Computer-Human Interaction (TOCHI), Volume 27, Issue 5

Article No.: 38, Pages 1 - 41

https://doi.org/10.1145/3402855

Published: 17 August 2020 Publication History

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.

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Index Terms

"I Cannot Do All of This Alone": Exploring Instrumental and Prayer Support in Online Health Communities
1. Human-centered computing
  1. Human computer interaction (HCI)
    1. Empirical studies in HCI

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Published In

cover image ACM Transactions on Computer-Human Interaction

ACM Transactions on Computer-Human Interaction Volume 27, Issue 5

October 2020

270 pages

ISSN:1073-0516

EISSN:1557-7325

DOI:10.1145/3415023

Editor:
Kristina Höök
KTH Royal Institute of Technology, Sweden

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Copyright © 2020 ACM.

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Publication History

Published: 17 August 2020

Accepted: 01 May 2020

Revised: 01 April 2020

Received: 01 October 2018

Published in TOCHI Volume 27, Issue 5

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Bosco COtenen EOsorio Torres JNguyen VChheda DPeng XJessup NHimes ACureton BLu YHill CHendrie HBarnes PShih P(2024)Designing a multimodal and culturally relevant ADRD generative AI tool for Black American informal caregivers: A cognitive walk-through usability study. (Preprint)JMIR Aging10.2196/60566Online publication date: 11-Jun-2024
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Parrocha ABernadas J(2024)‘They Know What It’s Like’: Exploring Facebook Groups for Digital CopingJournal of Creative Communications10.1177/0973258624122767019:2(115-129)Online publication date: 6-Feb-2024
https://doi.org/10.1177/09732586241227670
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https://dl.acm.org/doi/10.1145/3678884.3689132
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Wolf SFriedrich PHurtienne J(2024)Still Not a Lot of Research? Re-Examining HCI Research on Religion and SpiritualityExtended Abstracts of the CHI Conference on Human Factors in Computing Systems10.1145/3613905.3651058(1-15)Online publication date: 11-May-2024
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Chang IYou JYen D(2024)The five-factor model, social network, and social influence in instant messaging groupsAdvanced Design Research10.1016/j.ijadr.2024.04.0012:1(14-25)Online publication date: Jun-2024
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Wu PZhang RLuan J(2023)The effects of factors on the motivations for knowledge sharing in online health communities: A benefit-cost perspectivePLOS ONE10.1371/journal.pone.028667518:6(e0286675)Online publication date: 12-Jun-2023
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Lei QKuksenok KTang RGuo JJi RLI J(2023)Identity Struggles as Online Activism in China: A Case Study Based on "The Inviting Plan for 985 Fives" Community on DoubanProceedings of the ACM on Human-Computer Interaction10.1145/36100707:CSCW2(1-25)Online publication date: 4-Oct-2023
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Smith CMiller Hillberg HLevonian Z(2023)"Thoughts & Prayers" or " ❤️ & 🙏 ": How the Release of New Reactions on CaringBridge Reshapes Supportive Communication in Health CrisesProceedings of the ACM on Human-Computer Interaction10.1145/36100357:CSCW2(1-39)Online publication date: 4-Oct-2023
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