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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Posted in Abstract, Patient Communities

Cancer peer support providers provide insight on the role of online communities

See on Scoop.itJourneying Beyond Breast Cancer

Online communities offer cancer patients a convenient way to obtain supportive care from peers however, little is known about how or why patients use them for this purpose. Cancer peer support providers are in a unique position to provide insight on the role of online communities in relation to other sources of supportive care.  This multi-method study aimed to identify the extent, nature and conditions of online community use among breast cancer survivors, known to be peer support providers.

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Posted in Abstract, Patient Communities

Online Support Group for People Living with Depression (Abstract)

An increasing number of patients turn to the Internet to seek information and support. Online support groups, in particular, have shown a strong potential to foster supportive and resourceful environments for patients without restrictions of time, space, and stigma.

Research has found that users of those groups exchange various types of support, such as informational support, emotional support, and social companionship. However, due to the scarcity of research, many other aspects of depression online support groups remain inconclusive. For example, knowledge gaps exist in the areas of user characteristics, patterns of use, and relationship between the two. In particular, little is known about how user characteristics, such as gender, age, illness severity and treatment history, affect the way they use depression online support groups. For instance, severely depressed users may request emotional support more often than less depressed users.

Users with less depressive symptoms, on the other hand, may request informational support and social companionship more often than severely depressed users. Users of younger age may receive support more often than they to others, while older users may give support more often than they receive. But those hypotheses are not yet tested.

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