Over the last decade, peer support programs for men with prostate cancer have been reported in North America and Canada (Us Too and Man to Man), and in British Columbia (Prostate Support and Awareness). Such groups have also emerged across Australia, and more recently these groups affiliated with the Prostate Cancer Foundation of Australia (PCFA) as the Support and Advocacy Committee. Forty four groups exist under the umbrella of the PCFA, with each Australian state and territory represented. To date, however, empirical data has not been gathered on the activities of these groups. This report describes the first stage of a three-phase project to examine the current activities of these groups, how they assist men with prostate cancer, and consequently determine future program development needs.
In all, 41 group leaders were surveyed (93% response). Group membership consisted mostly of men who had been diagnosed with prostate cancer, with an estimated 3,300 men currently members. Groups were predominantly peer supervised. Other types of overall management and group facilitation were health professionals, and a shared role between a man who had had prostate cancer and a health professional. The mean time of group operation was four years and five months. The main sources of support for groups were local state councils and hospitals who provided assistance such as meeting rooms, photocopying and postage, a health professional to facilitate meetings, special training for members, and funds. Three groups described receiving no support from any source. The main activities undertaken by groups were general discussion meetings, group education sessions with guest lecturers, regular newsletters, and one to one telephone support by members with no special training.
Group leaders described doctors as referring men to their groups “sometimes” and as working “somewhat closely” with their groups. Working with doctors helped groups by providing expert information and advice to them, acting as a source of referral to and promotion for groups, and adding professionalism and credibility to them. In all, 63% of participants described wanting to work more closely with doctors in these ways. A key difficulty described by group leaders was that the responsibility for managing the group often fell to the same individuals, with difficulties experienced in recruiting other members to take on leadership roles in the group.
The present study demonstrates the depth of activity in peer support for prostate cancer in Australia and suggests that work to develop further collaborative relationships between these groups and health professionals may be needed. Prostate cancer support groups express a desire to work more closely with health professionals, and in particular doctors such as urologists and radiation oncologists. Further work to build on this preliminary study is in progress.