Secret Groups and Open Forums: Defining Online Support Communities from the Perspective of People Affected by Cancer

Harkins Lydia, Kinta Beaver, MARIA PAOLA DEY, Kartina Choong

Research output: Contribution to journalArticle

30 Downloads (Pure)

Abstract

Objective:
A quarter of people diagnosed with cancer lack social support. Online
cancer communities could allow people to connect and support one
another. However, the current proliferation of online support
communities constitute a range of online environments with differing
communication capacities and limitations. It is unclear what is perceived
as online cancer community support and how different features can help
or hinder supportive group processes.
This study aimed to explore how perceived support is influenced by the
different features and formats of online support environments.
Methods:
In-depth qualitative interviews were conducted with 23 individuals
affected by a range of cancer diagnoses, including both cancer survivors
and family members. Data were analysed using deductive thematic
analysis guided by a constructivist epistemological perspective.
Findings:
Online supportive communities were defined and differentiated by two
themes. Firstly, ‘Open forums’ were identified with thematic properties
which facilitated a uniquely informative environment including ‘Safety in
Anonymity’, ‘Perceived Reliability’ and ‘Exposure and Detachment’.
Secondly, ‘Secret groups’ were identified with thematic properties which
enhanced an emotionally supportive environment including ‘Personalised
Interactions’, an overt ‘Peer Hierarchy’, and ‘Crossing the Virtual Divide’.
Conclusions:
Properties of groups can engender different degrees of interpersonal
relations and different supportive interactions. In particular, support
community designers may want to adapt key features such as
anonymity, trustworthiness of websites, and the personalised nature ofconversations to influence the development of supportive environments.
In personalised peer-led groups, it may be prudent to provide guidance
on how to reassert a positive environment if arguments break out online.
Original languageEnglish
Pages (from-to)1-13
JournalDigital Health
Volume6
Early online date16 Jan 2020
DOIs
Publication statusPublished - 2020

Fingerprint

Neoplasms
Peer Group
Group Processes
Social Support
Interviews
Safety

Keywords

  • eHealth,
  • Cancer
  • Online
  • social support

Cite this

@article{7a4a17eabbdb4249bca61cd2bbcadbc2,
title = "Secret Groups and Open Forums: Defining Online Support Communities from the Perspective of People Affected by Cancer",
abstract = "Objective:A quarter of people diagnosed with cancer lack social support. Onlinecancer communities could allow people to connect and support oneanother. However, the current proliferation of online supportcommunities constitute a range of online environments with differingcommunication capacities and limitations. It is unclear what is perceivedas online cancer community support and how different features can helpor hinder supportive group processes.This study aimed to explore how perceived support is influenced by thedifferent features and formats of online support environments.Methods:In-depth qualitative interviews were conducted with 23 individualsaffected by a range of cancer diagnoses, including both cancer survivorsand family members. Data were analysed using deductive thematicanalysis guided by a constructivist epistemological perspective.Findings:Online supportive communities were defined and differentiated by twothemes. Firstly, ‘Open forums’ were identified with thematic propertieswhich facilitated a uniquely informative environment including ‘Safety inAnonymity’, ‘Perceived Reliability’ and ‘Exposure and Detachment’.Secondly, ‘Secret groups’ were identified with thematic properties whichenhanced an emotionally supportive environment including ‘PersonalisedInteractions’, an overt ‘Peer Hierarchy’, and ‘Crossing the Virtual Divide’.Conclusions:Properties of groups can engender different degrees of interpersonalrelations and different supportive interactions. In particular, supportcommunity designers may want to adapt key features such asanonymity, trustworthiness of websites, and the personalised nature ofconversations to influence the development of supportive environments.In personalised peer-led groups, it may be prudent to provide guidanceon how to reassert a positive environment if arguments break out online.",
keywords = "eHealth,, Cancer, Online, social support",
author = "Harkins Lydia and Kinta Beaver and DEY, {MARIA PAOLA} and Kartina Choong",
year = "2020",
doi = "10.1177/2055207619898993",
language = "English",
volume = "6",
pages = "1--13",
journal = "Digital Health",
issn = "2055-2076",
publisher = "Sage Publishing Inc",

}

Secret Groups and Open Forums: Defining Online Support Communities from the Perspective of People Affected by Cancer. / Lydia, Harkins; Beaver, Kinta; DEY, MARIA PAOLA; Choong, Kartina.

In: Digital Health, Vol. 6, 2020, p. 1-13.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Secret Groups and Open Forums: Defining Online Support Communities from the Perspective of People Affected by Cancer

AU - Lydia, Harkins

AU - Beaver, Kinta

AU - DEY, MARIA PAOLA

AU - Choong, Kartina

PY - 2020

Y1 - 2020

N2 - Objective:A quarter of people diagnosed with cancer lack social support. Onlinecancer communities could allow people to connect and support oneanother. However, the current proliferation of online supportcommunities constitute a range of online environments with differingcommunication capacities and limitations. It is unclear what is perceivedas online cancer community support and how different features can helpor hinder supportive group processes.This study aimed to explore how perceived support is influenced by thedifferent features and formats of online support environments.Methods:In-depth qualitative interviews were conducted with 23 individualsaffected by a range of cancer diagnoses, including both cancer survivorsand family members. Data were analysed using deductive thematicanalysis guided by a constructivist epistemological perspective.Findings:Online supportive communities were defined and differentiated by twothemes. Firstly, ‘Open forums’ were identified with thematic propertieswhich facilitated a uniquely informative environment including ‘Safety inAnonymity’, ‘Perceived Reliability’ and ‘Exposure and Detachment’.Secondly, ‘Secret groups’ were identified with thematic properties whichenhanced an emotionally supportive environment including ‘PersonalisedInteractions’, an overt ‘Peer Hierarchy’, and ‘Crossing the Virtual Divide’.Conclusions:Properties of groups can engender different degrees of interpersonalrelations and different supportive interactions. In particular, supportcommunity designers may want to adapt key features such asanonymity, trustworthiness of websites, and the personalised nature ofconversations to influence the development of supportive environments.In personalised peer-led groups, it may be prudent to provide guidanceon how to reassert a positive environment if arguments break out online.

AB - Objective:A quarter of people diagnosed with cancer lack social support. Onlinecancer communities could allow people to connect and support oneanother. However, the current proliferation of online supportcommunities constitute a range of online environments with differingcommunication capacities and limitations. It is unclear what is perceivedas online cancer community support and how different features can helpor hinder supportive group processes.This study aimed to explore how perceived support is influenced by thedifferent features and formats of online support environments.Methods:In-depth qualitative interviews were conducted with 23 individualsaffected by a range of cancer diagnoses, including both cancer survivorsand family members. Data were analysed using deductive thematicanalysis guided by a constructivist epistemological perspective.Findings:Online supportive communities were defined and differentiated by twothemes. Firstly, ‘Open forums’ were identified with thematic propertieswhich facilitated a uniquely informative environment including ‘Safety inAnonymity’, ‘Perceived Reliability’ and ‘Exposure and Detachment’.Secondly, ‘Secret groups’ were identified with thematic properties whichenhanced an emotionally supportive environment including ‘PersonalisedInteractions’, an overt ‘Peer Hierarchy’, and ‘Crossing the Virtual Divide’.Conclusions:Properties of groups can engender different degrees of interpersonalrelations and different supportive interactions. In particular, supportcommunity designers may want to adapt key features such asanonymity, trustworthiness of websites, and the personalised nature ofconversations to influence the development of supportive environments.In personalised peer-led groups, it may be prudent to provide guidanceon how to reassert a positive environment if arguments break out online.

KW - eHealth,

KW - Cancer

KW - Online

KW - social support

UR - http://journals.sagepub.com/doi/10.1177/2055207619898993

UR - http://www.mendeley.com/catalogue/secret-groups-open-forums-defining-online-support-communities-perspective-people-affected-cancer

U2 - 10.1177/2055207619898993

DO - 10.1177/2055207619898993

M3 - Article

VL - 6

SP - 1

EP - 13

JO - Digital Health

JF - Digital Health

SN - 2055-2076

ER -