Patient-initiated Online Support Groups: Motives for Initiation, Extent of Success and Success Factors

Medicine 2.0

Background Nowadays patients are able to choose between many online patient support groups [1, 2]. Most groups are initiated by individual patients or patient organizations. The threshold to start an online support group is low [3]. With patient-initiated groups now mushrooming, a need for an increase in research on this type of online support group is warranted [4]. Objective In a qualitative study, we explored the motives and goals of people who take the initiative to start such a group, so called webmasters. In addition, we wanted to learn more about how webmasters define success and success factors. Methods The webmasters of all Dutch online support groups for patients with arthritis, fibromyalgia and breast cancer (N=26) were approached if they were willing to be interviewed. In total 23 webmasters (7 arthritis, 8 fibromyalgia and 8 breast cancer) agreed to participate. The interviews were audio taped with prior consent of all participants and transcribed verbatim. Data were analyzed by two coders, using inductive analysis. Both coders separately read the entire transcripts several times, to identify emerging themes. Then the two coders met to discuss their findings in order to resolve differences. Results The analysis of the interviews revealed that most webmasters have altruistic motives for initiating a group, such as the provision of information and support or the empowerment of patients. However, several webmasters also mentioned intrinsic motives, like a hobby, or even as a kind of advertisement for a book. Webmasters defined success as the fulfillment of the goals they had in mind when they initiated their groups. Our study showed that before the support group goes online (the initiation stage), several decisions have to be taken about access, embedding, design, and content of the online group. The webmasters mentioned a number of pros and cons of the differing options, and stressed that the decisions need to be in coherence with their goals. When the group is online (the evolution stage), the success is dependent from the webmaster's success in managing the processes and people in the online group. Although webmasters have less influence over these aspects, since they do not control the participants of the online group, the webmasters mentioned pointers concerning the ways of promoting and financing the group, how to keep the group alive, the extent of moderation, the organization of meetings and rituals and the extent to which the wishes of the participants should be followed. Conclusions Our study yielded into guidelines for webmasters that might lead to successful online patient support groups. Success of the group is important, since it can be expected that effects of participation in an online support group for patients may vary, depending on the group's success. References [1] Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK. How cancer survivors provide support on cancer-related Internet mailing lists. J Med Internet Res 2007 May 14;9(2):e12. [2] Ginossar, T. Online participation: A content analysis of differences in utilization of two online cancer communities by men and women, patients and family members. Health Commun 2008;23: 1-12. [3] Preece, J. Online Communities. Designing usability, supporting sociability. Chichester, UK: Wiley, 2000. [4] Eysenbach G, Powell J, Englesakis M, Rizo C, Stern A. Health-related virtual communities and electronic support groups: systematic review of the effects of online peer-to-peer interactions. BMJ 2004; 328: 1166-1170.