Meeting the support needs of patients with complex regional pain syndrome through innovative use of wiki technology: a mixed-methods study

Jeffrey Gavin, Karen Rodham, Neil Coulson, Leon Watts

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Abstract

Background: Using online discussion forums can have a positive impact on psychological well-being through development of shared group identity and validation of thoughts, feelings and experiences. This may be particularly beneficial to people with complex regional pain syndrome (CRPS), who often become socially isolated, lack mobility and face threats to their sense of identity. We set up a peer-support online forum to identify the nature of support provided and to explore its development over time. We then introduced a collaborative writing task to facilitate further the development of social processes implicated in psychological support.
Research questions: (1) What constitutes support in newly developed online interactions? (2) How does the process of giving and receiving support online evolve? (3) Can the combination of an online forum and a collaborative writing task increase support relative to an online forum alone?
Design: This is a three-phase mixed-methods research design. Phase 1: an online forum was launched. Phase 2: forum members were invited to cowrite a patient-centred CRPS information resource. Phase 3: the resource was shared and feedback was sought.
Participants: Posts from 26 members (seven males, 19 females) were analysed. The mean age of members was 35.6 years. The number of years since diagnosis was available for 14 members (ranging from 5 months to 10 years with a mean duration of 3.9 years).
Data analysis: In order to explore what constitutes support in newly developed online interactions, an inductive thematic analysis was conducted on all ‘introductory posts’ posted during phase 1. In order to explore how the process of giving and receiving support online evolved, a deductive content analysis using the Social Support Behavior Code was conducted on all forum posts posted during the first 12 months.
Results: Five themes were identified in members’ first posts. Three of these themes contributed to the development of a ‘common-identity’ community, while the remaining two established a positive tone, consistent with that of a ‘common-bond’ community. Content analysis revealed that support requests were present in 15.5% of posts: predominantly informational support (8.6%) with the remaining support categories ranging from 1.3% to 2.6%. Social support was present in 88.8% of posts; predominantly emotional support (72.8%) followed by informational (36.2%) and esteem (30.2%) support. For a variety of reasons, we were unable to address the third question fully; we gave all members the option of contributing to the collaborative writing task and anticipated comparing those who accepted the invitation with those who did not. However, either participants continued to take part in the forum and contributed to the writing task, or they ceased to interact with the forum altogether, thereby limiting our ability to compare across time and task.
Conclusions: Few members of the forum explicitly requested social support, but many offered it (emotional support was the most prevalent). There was evidence of both common-identity and common-bond community development from the outset. This continued to shape forum interactions throughout the 12 months of the study and set up a space that had an over-riding positive and supportive tone which enabled the members to reach out and offer support to similar others, in effect helping them to re-engage with the wider world. Future work that examines support across networked online communities is necessary.
Funding: The National Institute for Health Research Health Services and Delivery Research programme.
Original languageEnglish
JournalHealth Services and Delivery Research
Volume2
Issue number24
DOIs
Publication statusPublished - Jul 2014

Keywords

  • wikis, CRPS, pain, interactive systems, computer-mediated communication

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