[Online support groups for localized prostate cancer: qualitative analysis of decision making]

In localized prostate cancer individual treatment decisions cannot be reached relying exclusively on medical data. Therefore, social interaction is of considerable importance and online support groups allow us to get to know a facet of this communication.

We investigated 82 thematically relevant threads representing 5% of the largest German online support group on prostate cancer (http://forum.prostatakrebs-bps.de). Two independent investigators used methods derived from grounded theory and linguistic conversation analysis to characterize the sample.

Users report on personal experience and provide subjective recommendations. At the same time those seeking advice are encouraged to weigh the information and to decide for themselves. Some urologists contribute to the discussion and seem to have a corrective influence, but their involvement is judged diversely. As mainly lay people with different levels of knowledge are involved in the discussion, a tentative language style is frequently used. The disease itself appears to be a linguistic taboo. Besides treatment recommendations, emotional support is of major concern. Being personally affected establishes a sense of unity, which adds to the subjective value of the communication.

Patients readily receive information, advice and emotional support in online support groups. Knowledge of such online services is useful in ensuring good counselling for our patients.