The role of self‐help groups in educating and supporting patients with prostate cancer and interstitial cystitis

OBJECTIVES To identify and compare the needs of patients with prostate cancer or interstitial cystitis (IC), and to evaluate the role of self‐help groups (SHGs) in meeting those needs, as SHGs are thought to be an important source of information and social support for such patients. METHODS The authors attended SHG meetings for prostate cancer and IC from September 2000 to May 2001. Issues related to SHGs were addressed by combining their experiences with those published previously. RESULTS Patients with prostate cancer appear to use SHGs primarily as a medium for advocacy and information sharing about the disease, whereas patients with IC seem to use SHGs for social support and coping skills. Patients perceive SHGs as being useful, but many do not attend these meetings. Urologists’ attitudes toward SHGs are identified as a potential factor contributing to the under‐use of SHGs by both groups of patients. CONCLUSIONS The inherent differences in disease and patient characteristics result in both groups of patients using SHGs for different reasons. The differences in therapeutic objectives are reflected in the format and content of SHG meetings. Issues related to not participating in SHGs and areas of future research are discussed.