Research indicates that prostate cancer support groups provide many benefits to their members. Within these groups, men share information and experiences, help one another cope after diagnosis and treatment, and unite to take meaningful actions in support of all men and their loved ones who have been affected by this disease. But why is it that some prostate cancer support groups flourish, attracting new, energetic members committed to providing relevant and informed assistance and encouragement, while other groups seem to languish, or even to wither away?

John Oliffe (PhD) and his colleagues have investigated this question by completing field work and conducting participant observation data on 15 prostate cancer support groups in British Columbia. To ensure diversity, the researchers included in their study small, medium-sized, and large groups from both rural and urban areas. Despite these differences, prostate cancer groups appeared to face similar sustainability issues: leadership and leadership succession, the continuing inclusion and engagement of membership, balancing group autonomy with useful networking or affiliation, and taking realistic and informed decisions about the group’s capacity for activism.

Leadership
Oliffe and his fellow researchers describe effective leadership as “the lynchpin to meeting diverse individual needs” within support groups and, consequently, as one of the most important factors in ensuring their sustainability.

Effective group leaders

• manage and promote group meetings efficiently;
• meet regularly with others, often in leadership committees, to plan meetings;
• actively maintain contact with members, through telephone and e-mail, for example;
• recruit speakers that bring special insights or expertise to group meetings;
• develop strong links to local doctors or professionals specializing in prostate cancer research or patient care; and
• have specific strategies to recruit and engage new members.

As important as strong leadership is to support group sustainability, when this leadership is the responsibility of one or two people or when there is no leadership succession planning, even the best-led group is vulnerable. Oliffe reports that the burden of support group leadership sometimes became too heavy when it was not shared, especially if individual leaders had this responsibility over long periods or during times when their health was declining. The leaders of five of the studied BC groups, groups that disbanded over the course of Oliffe’s research, confirmed this insight. They cite “the workload responsibilities associated with sole leadership” as contributing to the demise of their groups.

The study findings indicated that cohesive, committee-based leadership that used a “divide and conquer” approach was most likely to result in effective and sustainable PCSGs.

Again, no matter how strong the leadership or how numerous the members, groups without leadership succession planning could find themselves quickly in jeopardy when incumbent leaders stood down.

Including and Engaging Members
The study found that careful attention to the concerns and needs of both new and long-term members was also essential to support group sustainability.

Support groups flourished when

• leaders and long-term members greeted new participants warmly (and sometimes formally) and had specific and explicit strategies for establishing rapport and for including newcomers, e.g., special opportunities for new members to ask questions or receive information about their concerns;
• meetings addressed the information needs of all the group’s members, including the newly diagnosed (e.g., new members interested in treatments and general information), those undergoing treatment (e.g., men interested in coping with side effects and maintaining long-term health), and survivors (e.g., long-term members wanting to increase their knowledge about the disease, so they could help other men directly or engage in advocacy or awareness activities that would help men more generally); and
• meetings, while providing social connection in comfortable environments, were also stimulating, offering new insights or information.

A reason for membership attrition in some groups, according to the research, was that a “stalemate” developed during group meetings. Men in smaller groups came to know one another and their respective “cancer stories” so well that group meetings failed to stimulate any new conversations; these meetings came to serve a primarily social function, which, although significant to existing members, was not as appealing to potential new members (who wanted more focus on prostate cancer and its treatment). These groups did not recruit new members and could not sustain themselves over the long haul.

Autonomy and Affiliation
The study examines an interesting tension that affects support group sustainability: the tension between establishing a strong, independent identity as a support group and receiving assistance and resources from affiliation with local or national agencies. The interplay between these two tendencies is complex and, often, specific to a particular region or set of circumstances. Nevertheless, the study offers a significant insight by describing two, often conflicting, trends that can contribute to support group sustainability:

• A support group can develop a strong identity and a proud history of independent action; this autonomy empowers men not only to be proactive about their own prostate health but also to commit to their support group and to advocacy and public awareness campaigns.
• A support group can benefit from an affiliation with another agency or organization, perhaps through formal connection with prostate cancer researchers or care providers; through access to free resources, guidance, and funds; or because collective power increases the group’s ability to pursue significant activities or campaigns.

Capacity for Activism
Another factor in support group sustainability involves determining a group’s commitment to and capacity for activism. Again, one size does not fit all. One group may achieve sustainable success because it provides prostate cancer survivors with a springboard from which to take an active role in raising funds for research and in participating in national or international public awareness and advocacy campaigns. Another group may be successful because it focuses primarily on providing psychosocial support and current medical information to its members. Oliffe points to a significant fact here: the energy and resources of group members are not limitless. Consequently, a careful (and frequently revised) determination of what a group wants to do and is able to do is important for support group sustainability.

More information on this study will be available in the new year with the publication of “How prostate cancer support groups do and do not survive: British Columbian Perspectives.”