Empowerment from Online Support Groups

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Self-reported differences in empowerment between lurkers and posters
in online patient support groups.

J Med Internet Res. 2008 Jun 30;10(2):e18.

van Uden-Kraan CF, Drossaert CH, Taal E, Seydel ER, van de Laar MA.

Institute for Behavioural Research, University of Twente, PO Box 217,
7500 AE Enschede, The Netherlands.
c.f.vanuden-kraan@utwente.nl

PMID: 18653442


BACKGROUND: Patients who visit online support groups benefit in
various ways. Results of our earlier study indicated that
participation in online support groups had a profound effect on the
participants' feelings of "being empowered." However, most studies of
online patient support groups have focused on the members of these
groups who actively contribute by sending postings (posters). Thus
far, little is known about the impact for "lurkers" (ie, those who do
not actively participate by sending postings).

OBJECTIVE: In the present study, we explored if lurkers in online
patient support groups profit to the same extent as posters do.

METHODS: We searched the Internet with the search engine Google to
identify all Dutch online support groups for patients with breast
cancer, fibromyalgia, and arthritis. 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.

RESULTS: Lurkers (mean age 47 years) were slightly older than active
participants (mean age 43 years, P = .002), had a shorter disease
history (time since diagnosis 3.7 years vs 5.4 years, P = .001), and
reported lower mental well-being (SF 12 subscore 37.7 vs 40.5, P =
.004). No significant differences were found in other demographic
variables. 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 (all P < .001), and because other members expected them
to be there (P = .003). Lurkers and posters did not differ in their
information-related reasons for visiting the online support group.
Lurkers were significantly less satisfied with the online support
group compared to posters (P < .001). With regard to empowering
processes such as "exchanging information" and "finding recognition,"
lurkers scored significantly lower than posters. However, lurkers did
not differ significantly from posters with regard to most empowering
outcomes, such as "being better informed," "feeling more confident in
the relationship with their physician," "improved acceptance of the
disease," "feeling more confident about the treatment," "enhanced
self-esteem," and "increased optimism and control." The exception was
"enhanced social well-being," which scored significantly lower for
lurkers compared to posters (P < .001).

CONCLUSION: Our study 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.
Apparently, reading in itself is sufficient to profit from
participation in an online patient support group.