Studies have suggested that patients who use online support groups benefit in various ways:
- participants were being better informed
- they were feeling more confident with their physician, their treatment, and their social environment
- acceptance of the disease improved
- increased optimism and control
- enhanced self esteem and social well-being
In short online support groups had a profound effect on the participants’ feelings of “being empowered” in several areas.
Users of these online support groups can be divided in two groups. The posters who actively contribute by sending postings, and lurkers who use online support groups in a passive way, who do not actively participate.
Recent research revealed that participation in an online support group had the same profound effect on lurkers’ self-reported feelings of being empowered in several areas as it had on posters. This research was published in the Journal of Medical Internet Research:Self-Reported Differences in Empowerment Between Lurkers and Posters in Online Patient Support Groups
This research used online support groups for patients with breast cancer, fibromyalgia, and arthritis. They searched the Internet using the Google search engine to identify all Dutch online support groups for patients with breast cancer, fibromyalgia, and arthritis. In total, 19 groups were found.
Invitations to complete an online survey were sent out by the owners of 19 groups. In the online questionnaire, we asked questions about demographic and health characteristics, use of and satisfaction with the online support group, empowering processes, and empowering outcomes. The online questionnaire was completed by 528 individuals, of which 109 (21%) identified themselves as lurkers.
Differences between posters and lurkers:
- Lurkers were somewhat older and were more recently diagnosed compared to posters
- Lurkers had a poorer mental well-being than posters
- The lurkers participated for a significantly shorter period of time compared to the posters
- Lurkers visited the online support groups significantly less frequently than the posters did
- Posters indicated visiting the online support groups significantly more often for social reasons, such as curiosity about how other members were doing, to enjoy themselves, as a part of their daily routine, and because other members expected them to be there
- Lurkers were significantly less satisfied with the online support group compared to posters
- The lurkers experienced the outcome of “enhanced social well-being” significantly less often compared to the posters
So what are you, a lurker or a poster, let me know in the comments.
Gunther Eysenbach, Andrea Meier, Cornelia F van Uden-Kraan, Constance HC Drossaert, Erik Taal, Erwin R Seydel, Mart AFJ van de Laar (2008). Self-Reported Differences in Empowerment Between Lurkers and Posters in Online Patient Support Groups Journal of Medical Internet Research, 10 (2) DOI: 10.2196/jmir.992