Online peer support for patients with somatic diseases

With the availability of the Internet, so rose the opportunity to share concerns and experiences with peers online. In this thesis the meaning of online support groups for patients with rheumatoid arthritis, fibromyalgia and breast cancer was examined from different perspectives. To this aim, six studies were performed. In study 1 a content analysis was conducted on 1500 messages derived from various discussion groups for the aforementioned conditions. The main aim was to examine if the disadvantages that are mentioned in literature, actually occur. In study 2 a group of participants of various online discussion groups were (qualitatively and quantitatively) questioned about their use of these groups, the perceived advantages and disadvantages and if and how their participation empowers them. In the third study a representative sample of patients, derived from 2 hospitals, were asked to fill out written questionnaires to examine their use of Internet for health-related reasons and their participation in face-to-face and online support groups. The factors that are associated to this were also examined. In study 4 a group of patients with rheumatoid arthritis was qualitatively questioned about reasons for (not) engaging in (online) peer-to-peer support. In the fifth study a survey was sent to all Dutch rheumatologists and oncologists to explore their experiences and attitudes with regard to their patients’ health-related Internet use. Finally, in study 6, 23 webmasters of online support groups were interviewed to explore their reasons for initiating online support groups and the factors that determine the success of these groups. The main finding of our studies was that patients who use online support groups benefit in various ways, however, only a small proportion of Dutch patients participate in these groups.