Prostate cancer support groups : an evaluation

The population of Australia is increasing in age, consequently the incidence of cancer diagnoses is rising. This rise will have a dramatic impact on hospitals with much of the disease burden extending to psychological support for cancer care. At present few men diagnosed with cancer seek support. This study sought to explore men's perceptions of support and prostate cancer support groups. The benefits of support groups for men with prostate cancer have been well documented in international studies. In Australia however, relatively few men diagnosed with prostate cancer join such groups and few studies have examined the factors that influence membership and attendance. This study investigated the experiences of a sample of 181 Australian men diagnosed with prostate cancer, 80 of whom were members of support groups and 107 who were not. The participants were recruited from prostate cancer support groups and an outpatient department of a major cancer hospital, in Melbourne, Australia. The two groups were compared on a range of factors, including disease characteristics, illness perceptions and views of prostate cancer support groups. Further, members of support groups rated a number of objectives to determine the effectiveness of the groups. The majority of members recommended prostate cancer support groups to other men with prostate cancer (92%), however of the non-members of prostate cancer support groups, almost half (48%) had never heard of them. Factors that discriminated between support group members and non-members were emotional perceptions of the illness, symptom reports and illness coherence, with support group members reporting higher scores on these variables. Length of diagnosis and age were also factors that discriminated between the groups with support group members younger and diagnosed longer than non-members. There were no differences between the groups on personal control, both groups reported high perceptions of control over the disease. Members reported more benefits and less costs associated with prostate cancer support groups than non-members. Benefits included information, support, sharing experiences, and supporting other men with the disease. Costs included negative discussions, other men dying, and the distance required to travel to the groups. Both members and non-members reported distance to travel to the groups as a major barrier to attendance. The majority of members had heard of the groups through friends and, for non-members who had heard of the groups, through hospital staff. General practitioners were one of the least likely sources of information about prostate cancer support groups reported by members. Prostate cancer support group members reported high levels of satisfaction with the groups on a range of objectives outlined by the Cancer Council of Victoria. Making friends and accessing community assistance exceeded men's expectations of attendance, however men reported a desire for more information and communication. A need for more funding, advertising, and recognition of prostate cancer support groups by medical staff was also reported. Many men with prostate cancer are unaware of support groups, however a number of benefits were noted by both members and non-members. Greater recognition of prostate cancer support groups by medical staff may provide men with prostate cancer an opportunity to access those benefits. Health service providers should consider the important role prostate cancer support groups play in the recovery of men from prostate cancer and consider ways of dispelling myths men may hold regarding the notion of support