Implementing a Virtual Online Support Group for Bladder Cancer Patients :SP Cystectomy and Creation of Urinary Diversions

Objective:         Ostomy support groups provide patients with cancer a means of obtaining advice from peers who share a common experience in an environment that instills hope, promotes understanding, and enables acceptance. Traditional support groups have been face to face (F2F), however there has been a growing demand for online support groups (OSGs). This project describes the implementation of an OSG for Bladder Cancer patients after surgery with the creation of a urinary diversion.

Method:      A cancer center has a monthly F2F support group for bladder cancer patients who may have a urinary diversion.  Clients attend for information, and after surgery for ongoing peer support. Many patients requested an online option as there are geographic barriers to the F2F groups, several return to work, and some prefer this option.  Facilitators of the F2F developed an online version for our patients.  The Social Worker, CWOCN, and a RN from Urology met with the online support groups (OSGs) technical data assistant, attended training sessions, and a pilot was conducted.  The OSG was held every 3 months the first year, then switched to monthly (different date from the F2F) in the 2^nd year, and is now open to the community. The OSG is held in the evening. Patients receive advance notice, the data assistant provides technical support, collects an evaluation, and the facilitators encourage participant peer discussion.

Results and Discussion:     There are now several regulars to the OSG. Only first names are used so many patients actively engage in peer discussions. The clinical team had to learn communication without non-verbal cues, but having experienced the F2F has allowed for the effective adaptation to this version.

Conclusion:    Participation in OSGs can make a valuable contribution to the empowerment of patients, and provides an alternative means of support to those who cannot attend F2F groups.