Meeting the support needs of patients with Complex Regional Pain Syndrome (CRPS) through innovative use of wiki technology

Article history

The research reported in this issue of the journal was funded by the HS&DR programme or one of its proceeding programmes as project number 10/2000/40. The contractual start date was in January 2012. The final report began editorial review in October 2013 and was accepted for publication in April 2014. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.

Declared competing interests of authors

none

Copyright statement

© Queen’s Printer and Controller of HMSO 2014. This work was produced by Gavin et al. under the terms of a commissioning contract issued by the Secretary of State for Health. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.

What is complex regional pain syndrome?

Complex regional pain syndrome (CRPS) is difficult to diagnose and is characterised by burning pain in one or more limbs, swelling, and temperature and colour changes, with 15–20% of patients developing long-term disability. 1 The cause is unknown and there is currently no cure. It has an incidence of 5.46–26.2 per 100,000 person-years. 2 For those patients whose symptoms do not spontaneously resolve within the first year, long-term residual symptoms or impairment are common. Treatment is palliative rather than curative and so focuses on improving function. CRPS can be both distressing and debilitating and have a considerable impact on the lives of both the person with CRPS and those closest to them. 3

What is the impact of complex regional pain syndrome?

Current NHS policy and practice

Multidisciplinary rehabilitation (including psychological interventions) is recommended for the management of CRPS. 9 Patients in the UK may be referred to an inpatient programme at the Royal National Hospital for Rheumatic Diseases (RNHRD) in Bath. This is the only specialist inpatient programme for people with CRPS in the UK. The programme at the RNHRD is multidisciplinary, with a focus on physical rehabilitation (including physiotherapy, occupational therapy and hydrotherapy) and also includes sessions with health and clinical psychologists. Because treatment is palliative rather than curative, the main objective is to improve function and to encourage self-management. Implementation of skills developed on the inpatient programme (i.e. adherence to advice) is essential in order to lessen the impact that CRPS has on patients’ lives. Furthermore, active participation in the treatment process by the person with CRPS is essential for successful rehabilitation. 10 Online support can complement the rehabilitation process.

Coping with complex regional pain syndrome

The relationship between social support and physical and psychological well-being is well documented and includes positive adjustment and coping with illness,11 increased positive health behaviours12 and decreased physical disability. 7,13

Collaborative writing

To date, all research in this area has been conducted retrospectively on pre-established message boards. None have created a board from scratch and/or charted the development of support over time. Furthermore, the bulk of online support has been restricted to ‘traditional’ online systems (such as online forums) and not made use of more recent web technologies designed to encourage collaborative writing and the sharing of feelings, experiences and information. Blogging technologies have moved online self-expression and commentary forward, with the creation of sets of personal web pages that encourage a reaction from an invisible audience. Wikis are more community-centred technologies that were invented about 10 years ago. They originated to support collaborative document production and are, in essence, web pages with an edit button. However, some have been extended to incorporate personal blogs and, critically for this proposal, discussion spaces. MediaWiki is the most well known example, as it is the platform on which Wikipedia runs and has been designed to encourage people to get involved and has the effect of surfacing community roles and behavioural norms. 35 The productions of community members include not only the equivalent of an expository web page but also the discussion behind it. The discussion is quite unlike other online forums because it is editable, or ‘mutable’, in the same way as the web page. 36

Summary

In summary, our own and others’ previous research has shown that participating in online forums can be beneficial in terms of online support. While we expected these processes to develop naturally in the online support forum, this project aimed to develop support further by asking members to participate in a structured collaborative writing activity intended to help them construct a positive collective identity.

Design

We adopted a three-phase mixed-methods approach to this study (Figure 1). In phase, 1 an online forum for people with CRPS was developed and all members of crps@themin were invited to join, subject to agreeing to the moderation policy we developed in anticipation of this work (see Appendix 1). Phase 2 commenced after 3 months, when we introduced a collaborative writing task designed to run alongside the forum. In this task, forum members were invited to coconstruct a web page presenting CRPS in a way that they felt addressed the misconceptions around the condition. This was to be modelled on the Wikipedia page (http://en.wikipedia.org/wiki/Complex_regional_pain_syndrome) for the same condition, which had been written by experts and so lacked the voice of the person with CRPS. The intention behind the task, therefore, was to address this gap and ensure that the point of view of people with CRPS themselves was represented. In phase 3, the completed information resource was made available to forum members, their friends, family and carers.

FIGURE 1.

Three-phase approach.

Steering committee

All phases of this study were guided by a steering committee, which met at the beginning of the project and then 1 month prior to the beginning of each new element of the study. In addition to the named researchers, the steering committee included an expert patient, a research nurse with CRPS experience and a learning technology officer. The members of the steering committee saw drafts of the individual papers and presentations that comprise this report.

Sampling and recruitment

Initially, participants for phases 1 and 2 were drawn from a convenience sample consisting of members of crps@themin. Crps@themin was an independent support group formed by and for those who have been diagnosed as having CRPS and who have completed, or are currently undergoing, the rehabilitation programme run by the RNHRD. It changed its name to CRPS-UK and was subsequently suspended for much of our research study because the volunteers running the site were struggling to manage their commitments in addition to coping with their own CRPS. CRPS-UK has recently been relaunched (12 October 2013) in a limited capacity as a static website with the intention of introducing a Facebook site. Each year, the RNHRD sees approximately 80–100 new CRPS patients, all of whom are informed of the existence of the patient-run support group. This support group’s website functioned as a static online information resource, rather than an interactive forum. The commencement of the project was announced via a flyer (see Appendix 2) which was sent to all members of crps@themin inviting them to participate. Those who responded were sent an e-mail explaining the study and providing a link to the forum (see Appendix 3). Recruitment dropped off after the first month, and a further notice was posted on the CRPS-UK website (a more interactive off-shoot of the now-defunct crps@themin), and recruitment activities broadened to target a CRPS Facebook group and a Twitter (www.twitter.com) feed used by CRPS UK members. In phase 3, it was intended that participants would recruit family and friends to give feedback on the information resource. It is difficult to ascertain how many potential participants have seen our invitation because we targeted members of CRPS@themin and used a snowballing technique that included Facebook and Twitter.

All forum posts were collected for analysis; that is, they were copied from the forum into a Microsoft Word document (Microsoft Corporation, Redmond, WA, USA) in preparation for analysis. This method of data capture is one which has been used in a variety of other online contexts. 18

Addressing the research questions

In summary, the research was designed to answer the following three questions.

Evaluating the trustworthiness of qualitative analysis

The process by which the quality of qualitative research can be assessed has been widely debated and it has been acknowledged as typically less straightforward than that employed for quantitative work. 46 The relevance of traditionally positivist terms such as ‘reliability’ and ‘validity’ has been questioned, and the term ‘trustworthiness’ has been suggested as being more appropriate. 46 With this in mind, Yardley47 and Rolfe48 both emphasise the importance of the following principles when conducting high-quality qualitative work: sensitivity to context; commitment and rigour; transparency and coherence; and impact and importance.

Similarly, Mason49 suggests that researchers should demonstrate the trustworthiness of their work by showing that:

Data generation and analysis have not only been appropriate to the research questions, but also thorough, careful, honest and accurate (as distinct from true or correct – terms which many qualitative researchers would, of course, wish to reject). At the very least this means that you must satisfy yourself and others that you have not invented or misrepresented your data, or been careless and slipshod in your recording and analysis of data.

p. 188

Phase 1: the forum

The forum

The CRPS web forum used in this study was a closed, password-protected online community with no external access. Individuals had to agree to the rules of the forum (see Appendix 5) to join the project and to register with a username and password before they could access the forum and view messages posted by other individuals. All members were informed during the registration procedure that the forum was part of a research project and they gave full informed consent to their forum postings being used anonymously for research purposes. The welcome page reminded members of the forum etiquette, the fact that it was a research project and that the space was theirs to make of what they would (see Appendices 6 and 7).

The forum was divided into four distinct message boards under the broad heading ‘a place to discuss all things CRPS in the UK’. When the forum was launched, there were three boards: ‘welcome’, ‘your thoughts and experiences’, and ‘is the forum working for you?’. A fourth board (‘raise awareness of CRPS’) was added after 6 months to launch the collaborative writing task. The boards ‘raise awareness of CRPS’ and ‘is the forum working for you?’ contained a small number of threads and messages, with discussions that were primarily initiated by two of the researchers and our technical support officer. The other two boards, ‘welcome’ and ‘your thoughts and experiences’, contained a larger number of threads and messages, and discussions were primarily initiated by members who were CRPS patients. The four boards were created, named and described by the researchers in consultation with the steering committee. The forum administrators (i.e. the researchers) posted the first message on each board by way of introduction and to encourage members to begin posting. After this initial post, the researchers did not contribute any further posts to the three original boards. All threads and topics were initiated by the members themselves, and the forum was allowed to develop organically. Table 2 shows the board names and the initial posts describing them to forum members.

TABLE 2 - Forum board names and first post

Name	First post
Welcome	If you are new here (just registered with the forum), please tell us something about yourself in this section. Write as much or as little as you like, maybe how you discovered CRPS and how you are living with it
Your thoughts and experiences	Here is a space for you to discover the thoughts and experiences of other people living with chronic regional pain syndrome
Is the forum working for you?	Here’s where you have the opportunity to share your thoughts about the forum with the research team and the other members of the site. What’s working for you? What isn’t working? Or is there anything else you’d like to tell us?
Raise awareness of CRPS	People with CRPS said they wanted somewhere they could tell others what it was like to live with CRPS. Based on your ideas we have started an information resource. Each thread is targeted at different audiences and we need your help to fill in the details

The analyses of support (see Chapters 4 and 5) are based on messages posted in the ‘your thoughts and experiences’ and ‘welcome’ boards, as these boards are where the majority of member interactions occurred and they represent the thoughts, feelings and experiences of online forum members with CRPS, rather than being led by the researchers. The collaborative writing task was based in part on messages posted on the ‘raise awareness of CRPS’ board. The number of messages posted per month on each of the two member-led boards is shown in Table 3. The majority of forum activity occurred within the first 6 months after launch, with 215 out of 232 messages (92.7%) being posted during this period. Only 17 messages (7.3%) were posted during the second 6 months from December 2012 to May 2013.

TABLE 3 - Number of messages posted per month in the forum

Note

Messages dated March 2012 were posted by administrators before the forum was launched.

Month and year	‘Welcome’ board, n	‘Your thoughts and experiences’ board, n	Total, N
March 2012	1	0	1
June 2012	16	68	84
July 2012	6	18	24
August 2012	3	1	4
September 2012	12	16	28
October 2012	26	25	51
November 2012	7	16	23
December 2012	5	1	6
January 2013	0	6	6
February 2013	0	1	1
March 2013	0	1	1
April 2013	0	1	1
May 2013	0	2	2
Total	76	156	232

Figure 2 shows a screenshot of one of the boards and Figure 3 shows a screenshot of two example posts.

FIGURE 2.

Screenshot of the ‘your thoughts and experiences’ board.

FIGURE 3.

Screenshot of two example posts.

Ethical considerations

The CRPS support group around which this study was based is independent of the NHS, and therefore the study did not require NHS ethics approval. The project needed approval from the University of Bath Psychology Ethics committee only. The chairperson of Central Bristol Research Ethics Committee (REC) has confirmed that the project does not require review by a NHS REC. Fully informed consent was sought from all participants at every stage of this study. As this was in part an observational study of user engagement, users were informed that we would be analysing their discussions.

Consent was sought from all participants prior to taking part. They were informed that they could withdraw at any time, but that their data up until the point of withdrawal would be kept and analysed by the researchers. We anticipated this would be done online, but were prepared that, should this not be feasible, a paper consent form would be sent out via the site moderator.

Introduction

As outlined in Chapter 1, the means by which a supportive environment develops is likely to rely upon the development of a shared group identity. This is particularly relevant for those with CRPS because loss of identity is one of the issues that motivate people to seek support. Schwämmlein and Wodziecki50 recently highlighted the role that initial self-presentation plays in establishing a shared group identity online. Self-presentation generally is recognised as playing an important role in the development of online communities, enabling initiation of interactions, development of relationships and access to information. While research tends to focus on issues of privacy and anonymity in self-presentation,51 the importance of ‘initial self-presentation’ in online communities has recently been highlighted. Schwämmlein and Wodziecki50 demonstrated that the nature of the information provided in member profiles reflects the type of community and personal goals of group members. In particular, these initial forms of self-presentation distinguish between common-bond and common-identity communities.

Common-bond communities are defined by interpersonal relations among the members, who are encouraged to connect with each other. In contrast, common-identity communities are defined by a common topic or interest and support their members in performing a common task or working towards a common goal. While the former community is based on interpersonal attraction, the latter is based on social identification. The current study extends the work of Schwämmlein and Wodziecki50 by examining another form of initial self-presentation: first posts by members of a newly formed online support forum for people with CRPS.

In this chapter, we report on phase 1 of the study. This was the phase where the online forum was developed and people with CRPS invited to join. We monitored their interactions for 5 months. We encouraged members to make the forum their own. This enabled us to monitor the type of community that was evolving. Introductory (first) posts from phase 1 were cut and pasted from the forum into a Microsoft Word document. The posts were then thematically analysed according to the principles detailed by Braun and Clark. 52 Thematic analysis allows common themes and salient issues to be identified across a data set; the technique was, thus, considered particularly appropriate to the aims of the present study. We also report on the qualitative responses to the surveys completed at time 1 and time 2. Briefly, the process of analysis was as follows:

1. Familiarising self with the data: reading and rereading the posts, highlighting ideas for coding/themes.

2. Generating initial codes: organising the data into meaningful groups. The data set was worked through systematically and attention paid specifically to data items that might form the basis of repeated patterns (themes) across the data set.

3. Searching for themes: sorting the different codes into potential themes and collating all of the relevant coded extracts within the identified themes. Relationships between codes, between themes and between different levels of themes were identified.

4. Reviewing themes: ensuring that data within themes cohered together meaningfully and that the distinctions between themes were clear.

5. Defining and naming themes: identifying the ‘essence’ of what each theme was about and determining clearly what aspect of the data each theme captured.

The posts were initially coded by a member of the research team (KR), but in order to reduce researcher bias and optimise the trustworthiness of the analysis, a sample was independently coded by two other members of the team (JG and the research assistant). Coding initially involved attaching descriptive labels to discrete instances in the posts (e.g. ‘Took about 3 or so years to diagnose’ was labelled ‘diagnosis’). As coding progressed, more analytical categories were identified which served to integrate the aforementioned descriptive categories [e.g. the participants’ references to their diagnosis experience(s) were encapsulated by the category ‘journey to diagnosis’]. The three researchers then reviewed their analyses and agreed on themes. No substantial differences were found during the comparison. The final themes were chosen on the basis of the salience of the theme in the posts, rather than on the basis of prevalence of the theme alone. In line with the recommendations made by Braun and Clarke,52 it was considered good practice to make transparent the theoretical framework in which the analysis was conducted at the onset of the work. Unlike many qualitative analysis techniques, thematic analysis is not tied to a particular theoretical position and can thus be used within numerous theoretical frameworks, all of which bring with them different assumptions about the nature of data and what they represent in terms of ‘reality’. The present analysis was conducted in an essentialist/realist framework, which aims to report on the experience, meanings and reality of participants. Themes were, therefore, identified at the semantic level, i.e. within the explicit or surface meaning of the data.

Results

Twenty-three first posts were made in phase 1. Four posts were analysed separately because they contained no introductory information or preamble; instead, they sought advice, offered information, or sought sponsorship or volunteers. Following a thematic analysis of the remaining 19 posts, five themes were identified.

A standard format was quickly established by users as a means of introducing themselves: real name, age and ‘journey to diagnosis’. Indeed, ‘journey to diagnosis’ was a key theme, involving onset of symptoms, the quest for medical explanations, misdiagnoses, misunderstandings and multiple attempts at treatment, all of which contributed to a sense of frustration and exhaustion. The presentation of this journey served to legitimise their right both to membership and to speak on the site. Four other key themes comprised ‘treatment’, where they shared their experiences of different medications, and physical and psychological therapies; ‘contact with health professionals’, where they detailed both positive and negative experiences of interactions with the health-care community; ‘looking for the positives’, where they explicitly reframed their experiences in order to find the positives, and, in doing so, to shape the tone of the forum; and ‘hobbies’, which detailed both loss in terms of activities they could no longer perform and gain in terms of finding a means of engaging in these activities, albeit in modified form. All extracts from the first posts are presented verbatim, and therefore the original typographical and spelling errors are retained.

Qualitative data: time 1 and time 2

Surveys were administered at time 1 and time 2. Because so few participants completed the surveys (n = 15 at time 1 and n = 4 at time 2), we report here on the qualitative data that were collected in response to the final question, which invited participants to share anything else they thought we should know in order to better understand how the participants coped with CRPS. Thematic analysis of the responses identified four master themes: ‘symptoms of CRPS’, ‘understanding CRPS’, ‘support’ and ‘impact of CRPS’.

Summary

The main focus of participants’ free comments was their social network. Many reported losses in this area, predominantly through the loss of friends and everyday socialising; a few participants commented that their families had also suffered, with some reporting marriage collapse as a result of CRPS. Although some participants found new avenues for socialising via the internet, it was clear that this did not replace what they had lost prior to diagnosis. What the comments highlighted was the widespread impact that CRPS had; it affected not only the participant’s jobs or careers, but also those of the people who the participants relied upon for support.

Discussion

In this chapter, we have presented our preliminary analyses exploring the process by which a supportive community developed. Specifically, we explored the role of first posts in the development of a supportive online community and presented the thematic analysis of the free-text sections of the surveys conducted. In doing so, we have identified what participants considered both relevant and appropriate to share when joining the forum, and in this way have begun to address the question of how a supportive online community develops.

On joining, members took the opportunity to establish a ‘common-identity’ community. 50 This was established via three types of information-sharing evidenced in members’ initial self-presentations: ‘journey to diagnosis’, ‘treatment’ and ‘contact with health-care professionals’ were a means of demonstrating to other members the posters’ right to membership of the forum. These three types of information established a common experience of the route to diagnosis, the types of treatment and the kinds of interactions with health-care professionals that they had experienced. Together, these three themes might serve to create a developing sense of social identification and enhance the chance of being accepted by the community. 54 This, in turn, could foster commitment and attraction among the group,55 and, through the development of group identification, foster support and engagement with the group. 56

The remaining two types of information (‘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 the posters’ (difficult) situation. Consistent with the establishment of a common-bond community, this latter set of themes served to establish interpersonal relations and to encourage members to connect at a more personal level. There was no attempt to hide how difficult it was to live with CRPS, but effort was directed towards ensuring that posts had a positive tone. Hiding the reality of CRPS is something that occurs often in the offline world, with individuals fearful of becoming a burden or of being negatively perceived. 53 The forum provided members with an opportunity to be honest about how they were really feeling; the perceived need for pretence was not evident in their posts. Belonging to a group of people with similar experiences gave permission to ‘tell it how it really is’.

It is important to point out that we have not looked at interactions between those posting. We are mindful of the fact that those who joined the forum soon after its launch and starting posting at that time were likely to have ‘set the tone’ of the forum and so may have influenced the way in which subsequent members structured their own first posts. It is, therefore, not surprising that we found a marked consistency in the style and content of these first posts. The next chapter examines the types of support exhibited between members.

Introduction

A content analysis was conducted on all forum posts in the ‘welcome’ and ‘your thoughts and experiences’ boards in order to explore whether or not elements of support were present and whether or not they changed over time.

Data collection

All messages posted on both boards were selected and downloaded for analysis, covering the 12-month period between launching the forum on 1 June 2012 and data collection taking place on 31 May 2013. The data consisted of 79 messages (two threads) from the ‘welcome’ board and 157 messages (20 threads) from the ‘your thoughts and experiences’ board. Duplicate messages were removed, leaving an overall total of 232 messages for analysis. Messages were copied and pasted into a Microsoft Word document, where the messages were converted into plain-text format. This removed tables and other formatting features from the web forum, while retaining textual features such as spacing, punctuation and the use of abbreviations. The majority of forum activity occurred within the first 6 months after launch, with 215 out of 232 messages (92.7%) being posted during this period. Only 17 messages (7.3%) were posted during the second 6 months from December 2012 to May 2013. At this stage, most activity on the forum was occurring in the ‘raise awareness of CRPS’ board (see Chapter 6).

A total of 27 unique usernames were identified in the data set, comprising 26 members together with one administrator who was involved in running the project. The number of messages posted by each participant ranged from 1 to 53, with a median of three. Seven out of 26 participants (26.9%) posted only a single message in the forum. An additional 13 participants (50%) were also low-frequency posters, who all posted fewer than the mean number of messages. The remaining six participants (23.1%) were high-frequency posters, who together wrote 184 out of 232 messages (79.3%) posted to the forum.

The number of threads created by each participant ranged from none to four, with a median of zero threads started by each participant. Fourteen out of 26 participants (53.8%) did not create any new threads of their own. These participants only contributed to discussions that had previously been initiated by other members, responding to existing postings within the forum. Twelve out of 21 threads (57.1%) were created by the six high-frequency posters who also wrote the majority of forum messages. This indicates that this small group were core members of central importance to the forum, as they were responsible for the majority of threads and postings.

Analysis

Content analysis was used to examine the social support content of messages, using deductive (top-down) analysis to code the data into existing social support categories derived from the SSBC. 27,37 The SSBC was originally developed to assess the frequency of face-to-face supportive behaviours between spousal couples. This taxonomy was used to guide the analysis of messages in order to explore the occurrence of support-intended communication behaviours that fall into five main categories: emotional support (communicating love, concern or empathy), information support (providing information or advice), esteem support (communicating respect and confidence in abilities), network support (communicating belonging to a group of persons with similar concerns or experiences) and tangible assistance (providing, or offering to provide, goods or services). Each of these five categories can be divided into a number of subcategories (Table 4) and our analysis looked for instances of 22 subcategories in total. This taxonomy has been successfully adapted and used in the qualitative analysis of messages posted to other health-related online support groups. 19,24 This study uses Coulson and Greenwood’s22 adaptation, as shown in Table 4.

Using a deductive approach, data were coded in units of whole messages rather than using smaller units such as individual sentences, making it possible to identify the number of forum postings that fell within each social support category. Whole posts were analysed, rather than individual sentences within posts. If two or more categories of social support were present in a message, it was assigned to all relevant categories rather than labelling it with one category only. After each message had been several times to identify and label all instances of social support, the number of labels was counted to identify how many postings fell within each support category.

The content analysis was undertaken by NC together with a PhD student who has extensive experience of online support data coding. Each coder read and reread the data set independently, and using the coding framework (see Table 4), rated each message according to whether or not each of the five main types of social support was present. At this stage of the data analysis, there was agreement for 224 out of 232 (96.5%) of the messages. In the eight messages that were ambiguous, the coders discussed the nature of the ambiguity and this was easily resolved. Therefore, the 232 messages received 100% agreement in terms of the five main categories.

In terms of the social support subtypes, both coders reviewed all 232 messages and coded whether or not each subtype was present for (a) the requests and (b) what was offered. In terms of the analysis of social support requests, reliability was established by calculating Cohen’s kappa and this revealed an excellent level of agreement (κ = 0.92). Similarly, for the analysis of social support provision, inter-rater reliability was very good (κ = 0.87).

Results

Two types of analyses were conducted. The first looked at requests for social support and the second looked at the type of support offered. Requests for social support occurred infrequently on the forum, occurring in only 15.5% of posts. Support was frequently offered, however, occurring in 88.8% of posts.

Discussion

Requests for social support were infrequent, with only 15.5% of messages explicitly requesting some sort of support. In contrast, almost 90% (88.8%) of messages offered some form of support. More specifically, the most frequent type of support offered was ‘emotional’, with nearly three-quarters of posts (72.8%) containing offers of such support. By far the most important subcategory of emotional support was understanding/empathy, which was present in over 65% of the posts.

On the whole, there were strong levels of empathy, validation and advice displayed on this forum. Our previous research showed that validation and understanding were two of the most influential elements in facilitating the development of a supportive community. 18,53 From this point of view, we can conclude that, at least in the first 6 months of operation, our CRPS forum did indeed develop successfully as a supportive environment for people with CRPS.

It is important to note the types of support that were not (or were rarely) present in forum messages. There were relatively few offers of ‘network support’ (7.8%) or ‘tangible aid’ (2.6%). One possible explanation for this absence is that, although adapted for the online context, some categories of support measured by the SSBC were simply impractical for this particular virtual community, which was geographically spread, with members who have real-world physical disabilities. Future research could explore the relative balance and impact of offline physical support and online emotional support.

User involvement

People living with CRPS have been involved throughout this research, from inception and design to implementation and analysis. The initial idea for the study arose from interactions between KR (chief investigator) and patients in her practice role. It was clear that patients wanted a space where they could share their experiences with one another, as well as seek and provide support for each other. In the past there had been another CRPS message board,34 but this had been disbanded because the person running it could no longer co-ordinate the site on her own. Although patients appreciated and liked the existing site, they were not willing to help with the administration of it. A static website had been developed by the patient support group then known as crps@themin, and as a team we mooted the idea of a new interactive site being set up which crps@themin could take over on completion of the study, should the site be well received. This idea was positively received by the small group running crps@themin.

Design strategy: user value versus management outcomes

Our approach to the foundation of an active new interactive site owes to the user-centred design tradition in human–computer interaction (HCI). The ‘paradigm’ of the technology acceptance model (TAM) originated in the 1980s to address the problem of ‘active’ uptake of existing fixed and pre-determined information systems in commercial settings. 57 It was based on Fishbein and Ajzen’s58 theory of rational action, assuming that ‘intentions to use’ predict active behaviour. TAM’s simple assertion is that the combination of perceived usefulness and perceived ease of use is sufficient to account for ‘intention to use’. In advocating user-centred design, Gould and Lewis59 argued that the creation of a useful and easy-to-use computer system is subject to a very different dynamic. It depends on an early and continual focus on users; empirical measurement of usage; and a commitment to react and reformulate interactions on a similarly continuous basis. In the context of this project, it is very important to be clear about the meaning of our ‘users’. The TAM paradigm is premised on a performance concept of utility at work and is aimed at practicing managers where use is typically mandated. Users might refer to any potential beneficiary of the use of a system, including users of data derived from primary usage. In HCI, a ‘user’ is a person who actually interacts with an interactive system. Gould and Lewis originated this approach as a reaction to the many failed attempts to ‘get it right first time’, and development work that was driven by sets of management requirements rather than genuine user needs. In the context of an interactive system for a health community, the key elements that might constitute TAM utility are likely to be a poor fit for the values of our users. Holden and Karsh,60 in a critical review of the application of TAM to health information technology, argue that both perceived utility and perceived ease of use may be ‘drastically different’ with health-care culture and social influences that are simply absent from commercial settings.

As we developed our research strategy, we involved crps@themin in all decisions. Consequently, the ‘perceived utility’ was not a matter that applied to an innovation in service of anyone other than our users themselves. Although as researchers our own use was also a factor, we took a strong view that our own role must be deprecated in favour of people living with CRPS. Olson and Olson,61 in review, identify facilities for users to establish common ground, and with the potential for mutual understanding, as well as a mode of interaction that is loosely coupled as key determinants of success. To this end, a member of crps@themin agreed to join our steering group. She played an active role throughout the course of this research and has been an invaluable sounding board at times when ethical and practical issues have arisen. Furthermore, the research itself has involved people who were living with CRPS themselves. All phases of the study have involved them actively cocreating the forum and the wiki resource.

Developing the collaborative resource

The second phase of the study was designed to involve a subset of participants who would create a wiki-like page explaining CRPS from the perspective of a person living with CRPS to complement the existing wiki page written by health-care professionals.

Once we launched the writing task, although members were supportive and excited about the end product, they were reluctant to be the first to post their thoughts about the proposed content. After consultation with the steering group, we approached those members for whom we had e-mail details and invited them to contribute their thoughts anonymously via us. We were then able to collate the suggestions and post their ideas in the form of a rudimentary draft of the information resource. We posted this draft in a new board entitled ‘raise awareness of CRPS’, which contained threads corresponding to six ‘target audiences’ and suggested topics that had been identified by an analysis of users’ forum posts and e-mails. This approach created a safer start point, and discussion subsequently picked up.

We were then able to collate the suggestions and post them in the form of a rudimentary draft of the information resource describing CRPS to the outside world. This was posted on the site and opened for discussion and modification by forum members. Members remained reticent to post their thoughts openly, but some sent the team feedback via e-mails to the research assistant.

Our original plan had been to thematically analyse the construction of this coauthored text (online comments, amendments, deletions and discussions), with the aim being to identify how participants worked collaboratively to reach consensus about what to include on their wiki page. However, participants had not wished to engage with the task in this manner and so did not engage in discussions among themselves; instead, they simply added their suggestions to the resource or e-mailed the team directly to request that their suggestions be included.

As a consequence, although we have not been able to conduct the planned analysis, we have been able to analyse the forum posts and e-mails that ultimately formed the basis of this task, and have completed a thematic analysis of these data in a manner consistent with our original plans. This analysis has facilitated the development of the cocreated wiki page and to the suite of cocreated leaflets that are currently in draft format.

Extending the wiki resource

The team recognised the potential to extend the wiki resource by developing a suite of leaflets that could be downloaded and used by people with CRPS. We used the information from the wiki page developed in phase 2 in conjunction with an analysis of conversations that had been held on the forum, and designed three leaflets that were essentially written from the point of view of people with CRPS for health professionals, friends and family and employers. These draft leaflets (see Appendices 8, 9 and 10) were piloted at a patient-run conference on 12 October 2013. Fifty patients attended the conference, all of whom received copies of the draft leaflets and a feedback sheet. Sixteen provided feedback, which was overwhelmingly positive and constructive. General comments included:

These leaflets will be a great asset and take away that jumble of explanation you find yourself in so often

Thank you for representing us and for the above leaflets

Brilliant leaflets – am sure they will raise awareness and understanding. Thank you

Could you produce a pdf copy of each in black and white as well as colour – easier/cheaper to print

All the leaflets are a good form of information for everyone from health professionals to employers. Mainly employers – they have no idea what CRPS is at all and are too keen to dismiss or discriminate the employee

Constructive suggestions for improving the various leaflets were also made.

For the health professionals’ leaflet:

Love the mantra ‘move it, love it, touch it’ – perhaps include it in the other leaflets too

Make the patient feel like they are not alone

Under resources, put the website for CRPS professionals so that they can network and find out how to get advice

I think you should give more options to referral than Bath i.e. Liverpool (is there anywhere else?)

For the friends and family leaflet:

Could you add in the ways in which to help: wheat bags. Tens machine [a transcutaneous electrical nerve stimulation machine that can be used as an alternative to painkilling medication]. Desensitisation with different substances e.g. rice, play dough, custard powder mix etc? Include ideas like swimming, RDA [Riding for the Disabled Association] riding, distraction, board games, wii games (fun whilst moving?)

Could you put the CRPS mantra section that is in the health professionals leaflet in the friends and family leaflet, even if it is just the bit about touching the affected area?

Looks a bit boring, could do with more colours and pictures. Budapest criteria not really relevant, would be better with a better description of CRPS and more ways to help the person with CRPS instead

Not sure about the picture, but does show pain! Good information about CRPS showing CRPS is real! To believe the sufferers that they are experiencing real pain sensitivity etc

For the employers’ leaflet:

Extreme hot or cold can affect CRPS so don’t sit them near draughty doors. Allow 5 mins earlier for breaks to avoid the rush of staff/busyness in corridors. Allow them to use wheat bags, tens

People with CRPS should be given the chance to work from home. Suitable furniture should be supplied for DSE [display screen equipment] use

There is nothing about getting the employer to consider a more suitable role in the organisation, how sufferers can get fatigue, lack of concentration. Employers need to listen as it is such an individual condition – mention everyone is different

Really good. Employers perhaps need to make allowances if an employee has to take time off due to pain, but could suggest flexi-time? Work from home should always be an option if the work is suitable. At the same time, employees should be accountable and work to the best of their ability

The team are currently incorporating these suggestions into the draft leaflets, which will ‘go live’ once this task has been completed. The delegates at the patient-led conference wanted this to happen as soon as possible. This is an example of 360° feedback, whereby the online interactions among people with CRPS led to the development of the leaflets which have been piloted with another group of people living with CRPS.

Aims

In this project, we set up a peer-support online forum in order to identify the nature of support provided and to explore its development over time. We then introduced a collaborative writing task to the forum to facilitate further the development of social processes implicated in psychological support. This was intended to facilitate the exploration of the three 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 as well as a sense of psychological and physical well-being relative to an online forum alone?

How the protocol altered during the research process

We followed the protocol closely up until phase 3. At this time point, participants had disengaged from the forum and had been reluctant to engage in the writing task. This had a number of implications:

1. It was impossible to collect time 3 survey data. Furthermore, the responses to the time 1 and 2 survey had been poor, which meant that comparisons would be meaningless.

2. A comparison of forum-only and forum-plus-wiki participants was not feasible as the writing task remained part of the forum due to participants’ reluctance to write the wiki page themselves.

3. The wiki page remained in draft format and was never completed to a sufficient level for sharing more widely.

4. The lack of engagement with the writing task combined with the disengagement with the forum meant that it was not possible recruit friends and family to take part in online focus groups about their perception of the wiki.

In order to overcome the problem of lack of engagement (which began after the hacking event), we instituted a number of different strategies to try to re-engage the participants. We realised that participants were reluctant to be the first to write their thoughts about their condition in what was to become a formal wiki page. In order to get the ball rolling, we e-mailed members privately to ask them to indicate what issues they would like to see included on the wiki page. In addition, we analysed forum posts to identify issues that seemed to be of prime importance to members, which we integrated with the e-mail replies into a draft wiki page. We then shared the draft wiki page with the forum members and invited them to edit, add and comment on this. Using this iterative process generated some positive responses. However, the members did not fully engage and the wiki page remained in draft format.

The process of analysing the forum posts led to a recognition among the research team that there was enough information on the forum to generate an alternative resource which would address the patients’ concern that was the original driver for this piece of research: namely, that ‘others’ did not understand CRPS and that the voice of the person with CRPS was missing from what information was available. The team, therefore, developed a suite of leaflets written by people with CRPS for health-care professionals, friends and family and employers (see Chapter 5). Although not an intended outcome, this is one with a potentially large impact. The leaflets were piloted at a recent conference held by people with CRPS for people with CRPS and these comments were incorporated. The leaflets are now available online (https://sites.google.com/site/drkarenrodham/crps/crps-downloadable-docs) and have been circulated via the CRPS-UK e-mail list. A journal article discussing this as a useful process and outcome in its own right is currently in preparation.

What constitutes support in newly developed online interactions?

As we concluded in the previous chapter, few members of the forum 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. In terms of types of social support offered in the community, emotional support (in particular empathy and understanding) was the most prevalent. Posts offering validation and advice were also well represented in the forum. This support was offered in what appeared to be a strong, supportive community. From the outset, there was evidence of both common-identity and common-bond community development on the forum, which was in first posts as well as in the types of support offered in the first 12 months of forum activity.

One of the unique features of online support, compared with support offered face to face, is that it facilitates the discussion of taboo topics. 18 The forum analysed here did indeed open up such discussions. Specifically, it provided a safe space to criticise the health profession without fear of jeopardising future treatment options. The discussion of this ‘taboo’ topic dominated first posts and played a leading role in the establishment of a common-identity community. The topic formed the basis of many of the common experiences shared on the site, as well as generating much of the empathy and validation offered to fellow forum members. Related to this, hiding the reality of CRPS is something that is common in the offline world, with individuals fearful of becoming a burden or of being negatively perceived. 53 The forum provided members with an opportunity to be honest about how they were really feeling and the perceived need for pretence was not evident in their posts. Belonging to a group of people with similar experiences gave permission to ‘tell it how it really is.’

In the real world, people with CRPS can feel disempowered as they are able to engage less and less in activities that, prior to CRPS, were their norm. 53 They feel that they are a burden, and withdraw socially. 33 The online environment created by members of this forum provided an opportunity for them to reach out and offer support to others in a similar position, in effect helping them to re-engage with the wider world.

How does the process of giving and receiving support online evolve?

In Chapter 3, we presented a table showing how the membership, threads and posts evolved over time (see Table 1). The site was steadily increasing in membership and discussion up until the point that it was hacked. As mentioned in Chapter 3, we were forced to temporarily shut down the site while we unravelled who was and was not a bona fide member. After the site was reopened, use tailed off markedly. We had also intended to collect quantitative data at three time points to measure changes in support. Response rates were so low that statistical analysis of these data would have been meaningless and we therefore reported on the qualitative free text that was shared by participants at the end of the survey.

Nonetheless, 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. Indeed, in Chapter 4, we presented thematic analysis of these first posts, and their role in establishing a common-identity community and in setting the tone of the forum. Specifically, a community based on a common identity was established via three types of information sharing evident in initial self-presentations: the journey to diagnosis, treatment, and contact with care professionals. Each was a means of establishing a ‘right to membership’ of the group,21 thereby enhancing the possibility of members being accepted by the group and laying the foundations for the development of a sense of social identification. 54 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. Specifically 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. For example, two key subcategories of support involved validation of thoughts and feelings and expressions of understanding and empathy. Such forms of support strengthened members’ ‘right to belong’,21 while further contributing to the development of a growing common identity. Similarly, in terms of tone, there was a continued and explicit emphasis on ‘looking for the positive’ throughout forum posts. For example, many of the messages under the subcategory of encouragement related to overcoming obstacles, and in particular to successfully finding alternative hobbies or interests to replace ones curtailed by CRPS. Indeed, hobbies and sporting interests featured heavily in first posts, continued to feature throughout forum interactions, and were related to several types of support (e.g. validation, situation reappraisal and understanding/empathy).

It should be noted that, on the surface, participation on the forum appears to have been low, with just 6 of the 62 members posing 79.3% of the forum messages. However, this is line with comparable forums. 62 Indeed, ‘lurking’, or the act of reading but seldom publicly contributing to an online group, can be supportive in its own right. 63 Further research is needed to explore this passive form of engagement with health-related online support communities.

In summary, these analyses demonstrate that online support can evolve quickly, but the newly formed community can also erode quickly. In this respect, the hacking of our forum was actually very informative. It exemplified this process, but was not a situation that we as researchers could have anticipated or engineered. Indeed, it would have been unethical for us to do so. The demise of the forum in this way highlights the fragility of newly formed online communities and could offer some insight into why previous user-led/-run CRPS communities have folded.

Can the combination of an online forum and a collaborative writing task increase support as well as a sense of psychological and physical well-being relative to an online forum alone?

For a variety of reasons, we were unable to address this question fully. Because we were watching a forum grow organically, we made the decision not to assign participants to different groups. Instead, we gave all members the option of contributing to the collaborative writing task. We expected to be able to compare those who accepted the invitation with those who did not. However, the response to our invitation was ‘all or nothing’: either they contributed to both the forum and the writing task or they stopped participating in the forum and did not contribute to the writing task. This did not allow us to compare across conditions. Moreover, the writing task was launched just prior to the hacking event, after which usage of the forum markedly dropped off. It was, therefore, not possible to compare support before and after the introduction of the writing task. Similarly, it was not possible to collect the quantitative data further, limiting our ability to compare across time and task.

Ethical lessons

We made a decision to take a laissez-faire approach to moderating the forum. This was done with the intention of allowing the members of the forum to self-manage. From a research perspective, this was necessary to allow us to watch the unfettered evolution of support; any interference from the research team would have influenced the interactions taking place on the board. In taking this stance we were able to honour our ethos as researchers. However, from a practitioner perspective there is another ethos at work: to intervene if distress is detected. Although it is true that researchers have a responsibility to ‘do no harm’, they would be perhaps more comfortable with the presence of caveats which explained that the forum was not a medical forum and any health concerns were to have been addressed to the participants’ own GPs and not to the forum. One particular issue highlighted the tensions that exist between these subtle differences in researcher and practitioner ethics.

Several months into the study, a member of the research team (researcher 1) noticed that a member of the forum had posted a comment about not coping. Although the post suggested that this individual was very depressed and potentially suicidal, none of the other members of the community had responded. Another member of the research team (researcher 2) outlined a number of options in an e-mail to the rest of the team, and concluded with the following suggestion:

So what to do? It seems a real shame that there is no reply to this message. Our laissez-faire philosophy suggests that it is a community matter and we should do nothing. A bit like natural selection, members who can’t hack it wither away leaving only those who can thrive in this environment. But this isn’t natural selection. It is an attempt to foster the development of a supportive community. So I think it sets a poor precedent. [. . .] If we do intervene, it could be with a post under our existing identities or we could ask [computer technician] to create a fake account so it doesn’t look as though we are descending from upon high. [. . .] I shall ask [computer technician] to create an androgenous dummy account called ‘Alex’ that we could use for this purpose. So what do you think?

Researcher 1 responds positively to this suggestion, and this triggers researcher 3 to write:

Sorry – coming into this late – but

Noooooooooooooooooooooooooooooooooooooooooooooooooooooooo!!!

We cannot deceive people and let them think someone real is helping them – that’s completely unethical and I cannot be party to it. It is the sort of thing that could completely explode in our faces.

This example raises a number of issues. Most obviously, when and how should a researcher intervene? Researchers need to balance several conflicting interests: the objectivity of scientific research, their effect on the dynamics of the group and ensuring the safety of participants. As noted above, the multifaceted nature of online research ethics also brings to the fore the potential conflict between researcher and practitioner ethics. Thankfully, this was a moot point, as we discovered through our steering group member that the distressed participant had in fact been replied to in a separate Facebook page with an overlapping community that was not part of our study. Future researchers who set up their own forum need to consider not just ethical issues but also legal and moral responsibilities towards the participants. This is particularly important in health settings where research and practice responsibilities can become blurred. It is, therefore, of paramount importance to ensure that participant expectations are carefully managed from the start (e.g. explaining that the forum is not a source of 24-hour professional support).

Implications and future research

It is clear that it is no longer feasible to investigate online supportive communities or outpatient support in isolation. Patients provide and receive support via a number of online environments simultaneously, and online supportive communities are spread across multiple sites and multimedia platforms. For example, some of the members of our CRPS online forum were also familiar with each other through their interactions in Facebook and Twitter CRPS-related groups. Rather than think in terms of a support community existing in a single, bounded online space, it is more realistic to think in terms of ‘networked communities’, operating across several discrete but overlapping online settings.

Forums seem ‘old-fashioned’ as more and more online support is being set up by user groups (e.g. CRPS-UK) on social network sites such as Facebook. Would participants be as willing to discuss their condition ‘like it is’ in an online environment shared by members of their online social networks, which might include family and friends? Our study indicates that a seemingly ‘old-fashioned’ platform (i.e. a standalone online forum) was conducive to the development of a supportive community, albeit one that proved to be fragile. The implication is that those planning to set up an online supportive community should not automatically turn to the newest technologies or the latest trends in social networking, but should instead consider their membership, the issues those members might discuss, and, therefore, the type of online platform most suited to these goals. This leads to a number of questions:

• How does the type of support offered in a number of online platforms (e.g. forums, Twitter, Facebook) compare? Does the support differ by type? Does support evolve differently depending on the platform?

• Could it be that the closed nature of the community in our study meant that people felt safe and, therefore, happy to talk online? Would we necessarily get the same results in a forum that was in the public domain? Theory suggests that perceived privacy is helpful; this is worth exploring in the future.

• How does online engagement and interaction impact on offline interactions with family, friends and health professionals? How might it empower people to take ownership of their health and CRPS?

As the focus of much of this research would be on social media, future research needs innovative approaches adapted from media psychology, computer science and communication fields that go beyond controlled studies of self-contained and researcher-led websites. For example, internet-mapping techniques64 could be used to investigate the content and interconnectedness of formal and informal health-related websites and online communities. Participants of health-related forums or social networking sites could be interviewed while using a laptop with internet access and be asked to browse the web and show the sites, images and videos that they talk about and access regularly. Focus could include participants’ own websites (e.g. Facebook pages and Twitter feeds), and their posted stories, photos, videos and friendship networks, particularly those which involve the target health condition. These interviews could be recorded by digital video, allowing a visual record of the use of the laptop alongside the discussions between the researcher and the participants. Such research would enable a greater understanding of patient engagement with multiple and interconnecting websites, social media and networks.

Finally, when joining the forum, a standard format was quickly established as a means of members introducing themselves: real name, age and ‘journey to diagnosis’. Indeed, ‘journey to diagnosis’ was a key theme throughout forum posts, and involved onset of symptoms, the quest for medical explanations, misdiagnoses, misunderstandings and multiple attempts at treatment, all of which contributed to a sense of frustration and exhaustion among forum members. As discussed in Chapter 4, the presentation of this journey served to legitimise their right both to membership and to speak on the site. Other key themes included ‘treatment’, where members shared their experiences of different medications, and physical and psychological therapies, and ‘contact with health professionals’, where they detailed both positive and negative experiences of interactions with the health-care community. The fact that these themes were of such importance to this community has implications for other people living with CRPS as well as for clinicians. As noted in the introduction, CRPS is a condition diagnosed by exclusion, which can be a lengthy process. Clinicians need to be aware of the impact of this (often) long journey to diagnosis and the frustration that this engenders. This is particularly important in light of research demonstrating that frustration can impede engagement with therapy. 65 Forum posts indicate that forum users feel that their experiences were not heard by health-care professionals. Therefore, encouraging health-care professionals to actively listen to patients’ experiences, rather than medicalising the frustration, will foster a more productive partnership.

Final reflections

The over-riding barrier to our attempt to answer our third research question was the unexpected disengagement from our participants. This was especially surprising given that this project was a response to a patient-expressed need. This lack of engagement is, however, an extremely interesting finding in its own right and as a consequence of our attempts to re-engage participants we began to understand the challenges faced when dealing with patient use of multimedia settings. We suggest there were four potential explanations for the reduced engagement in our forum:

• Our site was hacked and had to be suspended while we addressed the problem, and possibly at that point lost its momentum.

• The wiki platform was ‘clunky’ and not user friendly. By this we mean that, unlike other more commonly used social media, such as Facebook or Twitter, the wiki platform was not intuitive to use, and the process of engaging with it lacked familiarity; moreover, it was not part of members’ social networking routine (see next point).

• Participants were members of a variety of other forms of social media and so had other, more established means of communication, which many used in addition to, and often in preference to, our platform.

• Participants were reluctant to voice their opinions concerning the content of the writing task; just because our participants were confident and experienced at writing in one public context (e.g. their own Facebook pages) did not mean that they would feel confident about doing so in other online contexts, particularly when the aim is to produce a more permanent record of their experiences.

This is a valuable lesson for any health professional or organisation considering setting up interactive online health initiatives. To keep the site running and to keep it safe (from hackers and other unwanted guests) was expensive and time-consuming. Even with our team skills we could not prevent the hacking event. Those thinking of setting up a site might consider how best to use existing social media that is both familiar to patients and already part of their e-routine. Moreover, this technology is free to harness and does not require dedicated technical staff to set up and maintain; nonetheless, it will require consideration of the ethical responsibilities.

Contributions of authors

Dr Jeff Gavin (Lecturer in Psychology) codesigned and led the study, conducted the analysis of first posts, and led the write-up of the report.

Dr Karen Rodham (Senior Lecturer in Psychology) contributed to the design of the study, facilitated access to participants, conducted the analyses of first posts and members’ feedback, and contributed to the writing of the entire report. She has been a practising health psychologist since 2006 and until December 2013 led the CRPS Psychology Centre at the Royal Mineral Hospital for Rheumatic Diseases, Bath.

Dr Neil Coulson (Associate Professor of Health Psychology) contributed to the design of the study, led the content analysis of forum posts, contributed to the literature review and conclusions, and provided overall editorial support for the entire report.

Dr Leon Watts (Lecturer in Computer Science) contributed to the literature review, creation and management of the forum, and provided support in writing the report.

Disclaimers

This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health.

Publications

Rodham K, Gavin, J, Coulson N, Watts L, Heath H. Let me introduce myself: the role of first posts in establishing a common-identity community in an online support forum. Conference on Social Psychology and Social Harmony, Beijing, China, 24–26 May 2013.

Moderation, anonymity and confidentiality of online wiki and forum participants

Use of the site will be subject to the same terms and conditions that are in force for the online resources provided by NHS Choices (http://talk.nhs.uk/terms/houserules.aspx). These terms and conditions are intended to safeguard members from inadvertently exposing themselves to the risk of criminality, such as identity theft. They further protect those who run the site from prosecution in the case of the illegality of actions its users might carry out by clearly debarring any form of activity that might be in breach of criminal or civil law. We shall additionally make clear that the content that users create should not be read or used as any form of officially sanctioned health advice. Contributions to the community site will be moderated by broadly the same set of rules that govern contributions to the NHS Choices communities. Moderation will be undertaken by members of the research team on a rotating basis. We will check the site on a twice daily basis, first thing in the morning and last thing in the afternoon. In joining the wiki and/or the forum, participants agree to abide by the terms and conditions we outlined in our protocol and as such we do not envisage moderating being an onerous task. All team members will be trained to undertake these editing actions by the technical support person. Future moderation will be undertaken by members of crps@themin. They will be both trained to moderate, and in turn to train others to moderate. This will ensure that they will have the skills to moderate the forum themselves, and to create accounts for new members. NC has experience at providing such training and will lead this phase of the project.

We do not intend to remove any contributions on the grounds that they promote a particular health perspective. However, we would remove contributions and retain the option to bar the relevant contributor, in the case that there is clear evidence that the contribution was offensive. Users will be free to use their own names, however they will be required to maintain the anonymity of any friends, family or health-care professionals that they might discuss. If and when members fail to do this, the relevant identities will be edited out of the online text and the member reminded of their obligation to respect third parties.

Your site, your thoughts

This site is for people with CRPS. It is for you to use as you see fit within the bounds of UK law and the terms of the user agreement you made when you registered to join it.

Respect one another

CRPS does not discriminate among those it strikes. You will know that CRPS affects people from all walks of life, in all circumstances, all races, all religions, and all political affiliations. Please respect one another. We do not moderate anything that you post to the forum in advance. This is a matter of principle for this project. So you should feel free to write whatever you want to but do not defame, slander or incite hatred. If disputes about the appropriateness of your postings arise, and they cannot be resolved by those involved, we shall make a binding decision on the matter and leave or delete accordingly. Remember the terms of the user agreement that you committed to when you signed up to join the site. If you break the terms of the agreement, we will delete your posts and your account will be suspended.

Research project

This CRPS online community has also been developed as part of a research project being conducted by the University of Bath and the University of Nottingham. Our aim is to explore how technology can be used to support the ongoing needs of individuals living with CRPS. Our goal is to share the positives – and to learn from the negatives – so that people who face challenges like CRPS can do so with more confidence and mutual support in the future. Your thoughts and experiences throughout this project are therefore incredibly valuable and we look forward to hearing from you going forward.

How information will be used

All the text on this site will be stored for the purposes of the research we are carrying out. However, we shall anonymise this information such that you will not be identifiable in any reports or presentations we, as researchers, may make as a result of the project.

We shall not use your postings or contact details in any way for advertising or other commercial purposes and will only use them for the purposes of research and understanding your online experience. We shall however contact you by e-mail from time to time to ask you to fill in an online questionnaire about your current CRPS situation and what you think of the forum. You do not have to complete one of these online questionnaires to stay a member of the online community but the more people who volunteer to do so will help us build a better picture of how, if at all, online communities such as this CRPS space, might help people like you. You can also share your thoughts and feedback about the forum by posting about it or contacting the research team (details below). We are always very keen to hear from you about your experience of the CRPS online community space.

User agreement

By signing up to access this site, also known as the CRPS Community Space, you agree to use the site subject to the terms and conditions stated on this page. We have tried to keep them short and direct but may need to change them from time to time as we learn about how best to support the activities of members of the site.

Signing up means that you become a member of this site. Postings or other information you encounter on the site will have been created by other members and hence should have been created by people who have also agreed to these terms and conditions.

The spirit of this site is one of informal help and personal support for people whose lives are affected by CRPS. So by signing up, you agree to read and contribute to the site in a way that you believe is important to your understanding and experience of CRPS. You do so with a reasonable expectation of being treated fairly by others and with reasonable care in your treatment of others.

These terms and conditions are intended to safeguard you and other members of the site from inadvertently exposing yourselves to the risk of criminality, such as identity theft. They are also intended to help protect those who run the site from prosecution in the case of the illegality of actions its users might carry out by clearly debarring any form of activity that might be in breach of criminal or civil law.

The content of messages or other information that you encounter on this site is entirely the responsibility of those who posted it. Under no circumstances should you treat anything you read or see on the site as officially sanctioned health or legal advice. We trust that the information you encounter has been provided in good faith but we cannot be held responsible if it is inaccurate or misleading and so results in physical mental, financial or other forms of loss or damage.

Unfortunately, previous experience tells us that from time to time some people or third party organisations will attempt to profit from or actively damage the site for their own ends. We cannot guarantee the safety of the information on the site because new forms of threat and abuse of online forums and website are constantly being invented. Consequently, by signing up you agree to adhere to the following rules:

• You must at all times act in a manner that is lawful.

• You must respect the opinions and experiences of other members of this site.

• You must not post your address, financial or other legal identity information on this site.

• You must not post the address, financial or other legal identity information of other people or organisations on this site.

• You must not attempt to profit from your use of the site through sale or promotion of goods or services.

• You must not abuse or insult fellow members of the site, or threaten or bully other members of the site.

• You must not create or transmit any offensive, obscene or indecent images, data or other material.

• You must not create or transmit material which is confidential or copyrighted to others.

• You must not carry out activities that corrupt or destroy other members’ data, including their messages.

We hope and trust that you find your membership of this site to be a positive experience as you confront your own personal challenges in living with CRPS.