"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

doi:10.1145/3402855

"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 journal › Article › peer-review

23 Scopus citations

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 language	English (US)
Article number	38
Journal	ACM Transactions on Computer-Human Interaction
Volume	27
Issue number	5
DOIs	https://doi.org/10.1145/3402855
State	Published - 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: [email protected]; S. O’Conner-Von, Earl E. Bakken Center for Spirituality & Healing, University of Minnesota, 420 Delaware St SE c592, Minneapolis, MN 55455; email: [email protected]. 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 [email protected]. © 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

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

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10.1145/3402855

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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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note = "Funding Information: The first author was supported by the Graduate Assistance in Areas of National Need Fellowship. Authors{\textquoteright} 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: [email protected]; S. O{\textquoteright}Conner-Von, Earl E. Bakken Center for Spirituality & Healing, University of Minnesota, 420 Delaware St SE c592, Minneapolis, MN 55455; email: [email protected]. 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 [email protected]. {\textcopyright} 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: {\textcopyright} 2020 ACM. Copyright: Copyright 2020 Elsevier B.V., All rights reserved.",

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

Abstract

Bibliographical note

Keywords

UN SDGs

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