Nurturing health-related online support groups: exploring the experience of patient moderators

Neil S. Coulson*, Rachel L. Shaw

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

The aim of this study was to examine the views of moderators across a diverse and geographically broad range of online support groups about their moderator experiences and to explore both the personal benefits as well as challenges involved. Thirty-three patient moderators completed an online questionnaire which included a series of open-ended questions. Thematic analysis identified three themes: emergence, empowerment, nurturing. Several moderators declared their own diagnosis and for some, being able to share personal insights motivated them to establish the group and in turn offered validation. They felt empowered by helping others and learned more about the condition through accessing the "communal brain". Some felt the group aided patients' access to health services and their ability to communicate with health professionals while others worried about them becoming over-dependent. Moderators described needing to nurture their group to ensure it offered a safe space for members. Clear rules of engagement, trust, organisation skills, compassion and kindness were considered essential. Patient moderated online support groups can be successfully developed and facilitated and can be empowering for both the group member and moderator alike.

Original languageEnglish
Pages (from-to)1695–1701
Number of pages7
JournalComputers in Human Behaviour
Volume29
Issue number4
Early online date14 Mar 2013
DOIs
Publication statusPublished - Jul 2013

Bibliographical note

NOTICE: this is the author’s version of a work that was accepted for publication in Computers in human behaviour. Changes resulting from the publishing process, such as peer review, editing, corrections, structural formatting, and other quality control mechanisms may not be reflected in this document. Changes may have been made to this work since it was submitted for publication. A definitive version was subsequently published in Coulson, NS & Shaw, RL, 'Nurturing health-related online support groups: exploring the experience of patient moderators' Computers in human behaviour, vol. 29, no. 4 (2013) DOI http://dx.doi.org/10.1016/j.chb.2013.02.003

Keywords

  • empowerment
  • moderators
  • online support groups
  • support
  • thematic analysis

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