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March 2008 Volume 2 #1
 Role of women in support groups New blood tests for PCa Physical activity and decreased PCa risk Conference 2008 |
The Role of Women in Support Groups By John Hoffman  When you talk to wives of prostate cancer patients, sooner or later you are bound to hear someone say, "This is a family disease." That's hardly surprising. Women have traditionally acted as "minister of health" in most families, so they expect to be active partners in their husbands' journey with prostate cancer.But the involvement of spouses is by no means limited to caring for the prostate cancer patient. Women often act as information gatherers and, at times, seekers of support. In fact, about 80 percent of first-time callers to CPCN's toll-free number are women. John Oliffe, assistant professor of nursing at the University of British Columbia recently did a study that focused on women's participation in support groups. He and his colleagues conducted in-depth interviews with 20 women who attended prostate cancer support group meetings in British Columbia. The researchers also attended and recorded their observations about women's participation at meetings of 13 BC support groups. Overall, this research confirmed Oliffe's impression from previous research on prostate cancer groups: women play an important role in these groups that many people think of as male territory. He was surprised, however, at how many women were taking part. "We found that there were more women at meetings than we expected to see, " says Oliffe. Oliffe identified three general roles played by women in prostate cancer support groups: social facilitator, background supporter, and cancer co-survivor. Social facilitators do various things to enhance the social connections that are so important to support groups, such as greeting people, welcoming new members, and looking after the refreshments. Background supporters tended to be less active. They would sit beside their husbands, often not saying much. Sometimes they took extensive notes, which the women said allowed their husbands to focus on the discussion. "Cancer co-survivors participated more like active stakeholders," says Oliffe. "They took part in discussions much like men did, except that they were more likely to express emotion and ask directly for support from others." Many of these women attended with their partners, but some attended alone. In fact, some of the women interviewed said their husbands might not have attended support group meetings on their own. "At one of the meetings, a woman told the group leader that her husband was reluctant to join the meeting and was actually outside in the car waiting to drive her home," Oliffe explains. "Together, they went out to the car and convinced the man to come in and join the meeting." In general, women said they were there to support their husbands, but it was also clear that they had needs of their own. As one spouse put it, "I went to support my husband because he was newly diagnosed, but I was also quite overwhelmed by the amount of information there was." Another said, "I had a need to talk. As much as your family and friends love you, they don't really have the knowledge. I believe that the groups can help enormously emotionally, and I think that emotion plays a huge role in the disease." Linda Garshon, a long-time member of Toronto Side by Side, the women's group that operates in tandem with the support group Toronto Man to Man, agrees. "The whole family has to get involved," she says. "The wife needs to know what to expect. If a man's having surgery, the catheter comes home with you. That can be very intimidating at first. Women can help each other prepare for it. I sure wish someone had done that for me when my husband was diagnosed nine years ago." Side by Side was launched in 1996. Women meet separately from men once a month (Man to Man meets bimonthly) for discussion and sharing. Every two months, Man to Man also hosts awareness nights, attended by both men and women. These are more informational in nature, featuring presentations by doctors and other health professionals. ProstAid, in Calgary, is considering the idea of starting a women's group. Their first effort in that direction was to devote a regular meeting to women's issues. Andrea Beck, a PhD student in clinical psychology at the University of Calgary who facilitated the evening, explains how she prepared for the women-focused program. "I got together with six women, who volunteered to help me plan the evening, and we discussed the challenges and issues that affected them personally, things like what coping strategies worked and what didn't work and changes in the couple relationship." The group identified a number of key areas to address, and one or two women agreed to speak when each of the issues was raised. One major issue was the difficulty women experienced getting help because they were not the patients. "Some felt that not a lot of support is offered to the partner," Beck says. Spouses also talked about the difficulty of dealing with their partner's erectile problems and fatigue and also the emotionality and decreased libido often experienced by men undergoing hormone treatment. It's not hard to imagine that it might difficult for both men and women to initiate discussion of some of these issues in a mixed-gender group with their partners present. "When we opened it up for discussion and questions, we asked people to write their questions down on cards," says Beck. "The anonymity made it a little easier." This kind of structured focus on women's experience might be helpful, Oliffe says, because women often feel some anxiety about exactly how active a role to play. Women often said things such as "I wasn't sure how much the spouse was supposed to say because the group was already set up, and it's a men's group." Obviously, the numbers of female participants noted by Oliffe's team suggests that many women manage to overcome that initial uncertainty and tension. That's good because it's quite clear to Oliffe that women play a very important role in support groups. "During the course of our study, two of the groups folded and both of those were men-only groups. I can't say for sure that's why they folded, but I'd suggest groups might want to think more about the role spouses can play in bringing more people out and sustaining an active membership. In some groups women might be the glue that holds the group together." But women who want to get involved should understand an important message. Don't expect that men will operate and behave in a group in the same way that women would. "Some women have said to me that men don't talk like they should, but I think men just talk the way they talk and it's different from what women would do, but it works. There's a lot of literature that says men don't look after their health, but the guys in prostate cancer support groups are definitely the exception to the rule. I think it's one of the great stories in men's health promotion." Acknowledging the important role of women in supporting men with prostate cancer, the CPCN will devote a special session to the issue at its national conference, to be held in Calgary, Alberta from the evening of August 3 through to noon August 5, 2008. Click here for more information about the conference. |
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