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.
Peer support programs are based on the premise that shared experience is a valuable coping resource that assists individuals to adjust to and cope effectively with stressful events. A number of studies using case comparison1,2, post-test3 and descriptive designs4,5 are available that suggest peer support programs are helpful for people with cancer. In these studies, peer support programs rate high levels of consumer satisfaction, and assist by providing unique information about coping from the perspective of shared experience, reducing social isolation, normalising the cancer experience and assisting with specific fears such as loss of masculinity and body image concerns. As well, patients have reported feeling less anxious and more optimistic about the future after involvement in peer support programs.
In addition, for specific groups where the incidence of cancer is low and social stigma or isolation may be a particular problem, peer support programs may be a preferred style of psychosocial intervention6. Further benefits are that being community-based, these programs are often easily accessed and are usually free of charge or low cost7. Prostate cancer peer support groups potentially provide a cost effective and valuable service to men with prostate cancer, and the evaluation and development of these groups is important for the psychosocial care of men with prostate cancer in our community.
Over the past five to 10 years, prostate cancer support groups that provide emotional and informational support to men with prostate cancer have emerged across Australia. A recent development has been the affiliation of these groups with the Prostate Cancer Foundation of Australia (PCFA), with 44 groups registered as part of its Support and Advocacy Committee. The PCFA is the single largest network of prostate cancer peer support groups in Australia. However to date, empirical data describing membership and the styles of support offered to men has not been obtained. As well, while anecdotally some group leaders have described to the current research team a lack of support from health professionals for their activities, this aspect has not yet been investigated.
At the national meeting of the Australian Prostate Cancer Collaboration in 2001, members of the PCFA Support and Advocacy Committee requested the assistance of the APCC Education Committee in investigating these issues. Accordingly, a collaborative group including representation from the PCFA, the APCC and state/territory Cancer Councils was formed to undertake a three-phase project to address these aims. Phase one, that is reported here, was designed to describe the current activities of prostate cancer support groups affiliated with the Support and Advocacy Committee of the Prostate Cancer Foundation of Australia. In particular this included:
A cross-sectional descriptive mail survey of the group leaders of 44 community-based prostate cancer support groups who are affiliated with the PCFA was undertaken. Participants were recruited by mail through the PCFA. In all, 41 group leaders participated (93% response). Table one describes the geographical location of groups that were surveyed and the approximate membership served by these groups.
The survey questionnaire was developed to assess the study objectives and included both closed and open-ended questions. The framework for the study was drawn from a recent review of peer support in cancer8 (see figure one). Thus, the type of supervision utilised by groups, the interpersonal context in which support is offered, and the mode of delivery were assessed. Before being administered to participants, the questionnaire was reviewed by members of the PCFA and the APCC to ensure that it was of low subject burden and appropriate to the needs of these groups. Only minor revision was required.
Participants indicated that their group membership consisted predominantly of men who have had prostate cancer. Based on the figures provided we estimate that 3,300 men in Australia are currently involved in these groups (see table one). However, as record-keeping practices amongst groups vary, this is an approximate figure. For example, some groups utilised a range of strategies to update their mailing lists, such as telephone contact with members, monitoring meeting attendance, regular reminders in newsletters asking members to notify any change of status and annual mail list updates. However, other groups undertook no activities to update mailing lists. Some groups indicated that the partners of men with prostate cancer were also involved, as well as health professionals, family members and well men with an interest in prostate cancer.
Groups were managed overall, and monthly meetings facilitated, mostly by men who had been previously diagnosed with prostate cancer (76% and 71% respectively). Other types of overall management and group facilitation were health professionals (17% and 29%) and a shared role between a man who had had prostate cancer and a health professional (7%). The time period over which groups had been operating ranged from newly formed (less than one month) to eight years, with the mean time of group operation being four years and five months.
The most common ways that groups advertised or promoted their activities were through newspapers (80%), the existing membership (73%), health professionals (63%), other community groups (45%) and radio (38%). In terms of support for the groups themselves, just over half of all groups described state/territory Cancer Councils (56%) and the PCFA (51%) as sources of support for their groups, with a third describing hospitals (32%). However, the main sources of support were state councils and hospitals (see table two). Support provided included meeting rooms (81%), photocopying and postage (63%), a health professional to facilitate meetings (27%), providing special training for members (17%) and funds (15%). Three groups described receiving no support from any source.
Group leaders were asked to indicate what types of activities their groups undertook. The median number of support activities undertaken by groups was five, with a range of 11 out of 12 possible options. Table three lists the percentage of groups undertaking these various activities. Participants were then asked to indicate the main activities undertaken by their groups. Main activities indicated by more than a quarter of participants were group general discussion meetings (93%), group education sessions with guest lecturers (81%), regular newsletters (42%), and one to one telephone support by members with no special training (37%). These support activities were also indicated by group leaders as those most utilised by their members: group general discussion meetings (93%), group education sessions with guest lecturers (71%), regular newsletters (42%) and one to one telephone support by members with no special training (29%). The frequency of group meetings varied from fortnightly, to monthly, to quarterly. The mean number of attendees at these meetings was 23 people (SD=15.5), but this varied with some groups reporting on average 80 men attending their meetings.
Relationships with doctors
Participants were asked to indicate how often doctors referred patients with prostate cancer to their groups on a Likert type scale of one, “not at all” to three, “sometimes” to five, “very often”. Scores ranged from one to five, with a mean score of 2.3, a low to mid range figure that approximates to “sometimes”. Table four indicates the relative distribution of scores for this question.
Next, participants were asked to indicate how closely they worked with doctors on a Likert type scale of one, “not at all closely” to three “somewhat closely” to five “very closely”. Results demonstrated a similar pattern with scores ranging from one to five and mean score for this question of 2.6, a mid-range figure that approximates to “somewhat closely”. Table five indicates the relative distribution of scores for this question.
Participants were asked in an open question to describe how working with doctors helped their groups. Responses were grouped in three themes: as providers of expert information and advice to the group (for example guest speakers, treatment updates, advice about prostate cancer generally); as a source of referral to and promotion for the group; and adding professionalism and credibility to the group. In all, 63% of participants outlined ways they would like to work more closely with doctors, and these included increased contact and support from doctors, referral of patients by doctors to the group, and transfer of information about prostate cancer from doctors to groups. Participants described having varied relationships with doctors, with some doctors very supportive of their activities and other doctors having no involvement.
Challenges of managing prostate cancer support groups
Participants were then asked in two open questions to describe what difficulties they experience in running prostate cancer support groups and what, from their point of view, would help them to run these groups more effectively. Table six describes these responses, listing those items most commonly described first. A key difficulty was that the responsibility for managing the group often fell to the same individuals, with difficulties experienced in recruiting other group members to take on leadership roles in the group.
The present report describes a wide range of prostate cancer related activities being undertaken by what is essentially a voluntary group of committed consumers. Most groups are managed and led by men who have had prostate cancer, although a sizeable subgroup either shares this responsibility with health professionals or are professionally led. While group activities undertaken range across support and advocacy, the groups are primarily occupied with the task of supporting men with prostate cancer and their families. A variety of methods is used to provide this support, for example one group works through e-mail and the Internet, however most groups support men through regular group meetings. Finally, the level of group membership and attendance at meetings indicates that these groups are very active and are being utilised by men, and so are an important part of the prostate cancer supportive care context in Australia. Given that men are less inclined to seek emotional support or psychological help compared with women these groups may present an avenue of support for men that is more acceptable to them and thus more likely to be utilised9-11.
Although the majority of these groups are peer-led, most groups work closely with a range of health care service providers, in particular state/territory Cancer Councils and hospitals, and many would find it helpful to work more closely with these organisations and other health professionals. Although over half of the groups indicated ways they would like to work more closely with doctors, it is encouraging to note that a sizeable number (29%) reported that they currently worked moderately closely or very closely with doctors. Health professionals, and in particular clinicians, are important gatekeepers and stakeholders in the psychosocial care and support of their patients. Work to improve the relationship and link between prostate cancer support groups and health care providers is a priority for the future development of these groups, and the improvement of supportive care for men with prostate cancer and their families.
The PCFA network of groups is an excellent example of a community-based support program that has emerged out of community need. A central aspect of community-based programs is that control of decision-making about priorities rests with the community or target group, who then themselves enact and develop the action plan. Optimally, this leads to the development of a community culture that facilitates ongoing and self-generated learning, support and empowerment within the community itself12. However, this can create challenges. First, because of the voluntary nature of such movements, the work and responsibility for action can fall upon a few individuals, and this may not be sustainable in the long run. Second, because community-based programs may develop outside of mainstream services, a lack of integration between conventional services and community-based programs can develop, particularly when world views differ. This again highlights the need for work to develop understanding and collaborative links between services.
In response to these issues, the current project team is working on a second phase of this project to identify how these groups work with men, from the perspective of group members. A third phase is also planned to look more closely at the relationship between these groups and health professionals, and strategies to optimise this interaction. Finally, we would like to thank the group leaders of the support groups who participated in this study, for their openness and willingness to work with us on this project.
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