The Health Services and Delivery Research Journal, part of the National Institute for Health Research (NIHR), has published a paper on the use of online peer support and wiki-technology to meet the support needs of patients with complex regional pain syndrome.
Participating in an online forum can help people to learn about their condition and connect them with people who are experiencing similar problems, thereby developing a ‘shared identity’. The process of finding that their experiences are not unusual and that other people have faced similar situations can make them feel better about their own situation simply through the realisation that they are not alone. 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.
This project set up a peer-support online forum to identify the nature of support provided and to explore its development over time. It then introduced a collaborative writing task to facilitate further the development of social processes implicated in psychological support.
The research sought to answer the following questions:
- What constitutes support in newly developed online interactions?
- How does the process of giving and receiving support online evolve?
- Can the combination of an online forum and a collaborative writing task increase support relative to an online forum alone?
After running for 6 months, there were 62 forum members, 29 threads and 217 topics on the forum. Twenty-six forum members were active forum participants (seven males, 19 females) and their contributions 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).
Five themes were identified in members’ first posts. Three themes established a common-identity and common experience of the:
- Route to diagnosis
- Types of treatment used
- Kinds of interactions with health-care professionals that they had experienced
Together, these themes contributed to a developing sense of social identification and enhanced the chance of being accepted by the community, thus fostering commitment and attraction among the group.
The remaining two themes (‘looking for the positive’ and ‘hobbies’) were a means of establishing the tone of the forum. Although it was acceptable to write about negative experiences in a first post, and to note the struggles and obstacles that had been placed in one’s way, there was an explicit attempt in the posts (through gentle humour or overt positive framing) to proactively look for the positive in their (difficult) situation. This latter set of themes was consistent with the establishment 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. 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.
The researchers were able to address the first two research questions in full, and below is an extract from the paper with the conclusions. The third question posted by the research was unable to be addressed for a variety of reasons discussed in full in the paper itself.
1. What constitutes support in newly developed online interactions?
Few members of the forum participants explicitly requested social support, but many offered it. Perhaps joining the forum was a request for support in and of itself. Indeed, nearly 90% of posts contained some form of social support. Support was constituted here in a number of ways: emotional support (in particular empathy and understanding) was the most prevalent. From the outset, there was evidence of both common-identity and common-bond community development on the forum, which was present in first posts as well as in the types of support offered in the first 12 months of forum activity.
An advantage of online support compared with support offered face to face is that it facilitates the discussion of taboo topics. The forum analysed here did open up such discussions, providing a safe space to criticise the health profession without fear of jeopardising their treatment options. Belonging to a group of people with similar experiences gave permission to ‘tell it how it really is.’
Finally, the online environment created by members of this forum provided an opportunity for them to reach out and offer support to similar others, in effect helping them to re-engage with the wider world.
2. How does the process of giving and receiving support online evolve?
One of the unique features of this study was that we were able to investigate the development of a supportive online community from its inception. That is, we were able to investigate this online community from the very first post. We have shown that during the early stages of the forum, the members set up a space that had an over-riding positive, open and supportive tone. These first posts also served to establish a common bond between users of the forum. Sharing the struggles and obstacles they faced served to emphasise the similarities in their respective offline situations, thereby creating a common connection. The elements of a common-bond and common-identity community, once established in initial posts, continued to shape forum interactions throughout the 12 months of forum activity.
The study also found that although a supportive community can quickly develop, it can also quickly erode. It concludes that it is no longer feasible to study online supportive communities in isolation. Instead, researchers need to consider them in the context of participants’ wider social media practices.
Gavin J, Rodham K, Coulson N, Watts L. Meeting the support needs of patients with complex regional pain syndrome through innovative use of wiki technology: a mixed-methods study. Health Serv Deliv Res 2014;2(24)