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

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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

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Keywords

  • eHealth,
  • Cancer
  • Online
  • social support

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