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 journalArticlepeer-review

    1 Citation (Scopus)
    59 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

    Keywords

    • eHealth,
    • Cancer
    • Online
    • social support

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