Posted in #BCSM, #HCSM, Community Manager, Patient Communities

The challenge of fitting in: A study of Norwegian breast cancer online self-help group

Online self-help groups multiply peoples’ possibilities to exchange information and social support. Such possibilities are expected to be of crucial value for the ‘new’ healthcare user. However, similar to experiences from face-to-face based groups, studies of online self-help groups report high drop-out rates. Knowledge about why this happens is scarce. By means of qualitative interviews and participant observation, this article examines non-participation and withdrawal from an online self-help group for Norwegian breast cancer patients. Five conditions are identified as barriers to use; a need to avoid painful details about cancer, not being ‘ill enough’ to participate, the challenge of establishing a legitimate position in the group, the organisation of everyday life and illness phases that did not motivate for self-help group participation. I suggest that an adoption of the biomedical explanation model represents an important background for this pattern, an argument which contrasts prominent assumptions about the new healthcare user who does not accept the biomedical ‘restitution story’ in her efforts to make sense of an illness. A further suggestion is that experiences of self-help groups as arenas for successful coping need to be further considered as a barrier to use.

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