Women influence their spouses’ experiences of prostate cancer (PCa), and are also significantly affected by living with a partner who has PCa. So much so, that PCa has emerged as a “couple’s illness” in which the disease, as well as its treatments, affect relationships across the entire illness trajectory. To further understand how PCa was situated and negotiated as a ‘couple’s illness’ we described women’s participation at PCSGs, addressing the reasons why women attended the groups and the roles they played at group meetings.
Reasons for attending
Despite feeling anxious and wondering whether they would fit in at a men’s group meeting, most women decided to attend group meetings as a means to support their husbands. In addition, attending groups allowed the women to obtain much needed information about PCa treatments and access the experiences of other women. A 64-year-old woman who had been attending group meetings for one year explained:
“I went to support my husband because he was newly diagnosed but I also was quite overwhelmed by the amount of information there was….So I found that maybe the support group there would be an opportunity to begin to make more sense of …the medical aspect of it but also maybe the psychological, also to hear people’s stories and then for myself to be able to not only discuss things with my husband but hopefully to discuss things with other women.”
Within the groups we examined, women assumed three roles that were strongly influenced by the composition of the group and the length of time they had been attending. Most commonly, women were social facilitators, establishing and sustaining social connections within the group by welcoming new members and serving refreshments, or organizing social events. Women also operated as background supporters, wanting to be there for their husbands without disrupting the men’s ownership of the group because they believed this would inhibit men’s support for each other. Positioning themselves in this way helped minimize the women’s anxiety about attending a men’s group, and provided a way to encourage men’s self-disclosure. Conversely, some women explicitly positioned the experience of PCa as a couple’s illness and adopted the role of a cancer co-survivor. These women shared and solicited support,
and did not downplay their involvement in the group, realizing that it’s just not a man’s disease, it’s their disease too. It was also clear that PCSGs offered important opportunities for women to access much needed support, as suggested by a 59-year-old woman who had been attending group meetings for 12 years:
“I had a need to talk desperately, I had my friends who had empathy and caring but they had no idea what I was going through and if any of them were losing their husbands, they were losing them through divorce not this. As much as your family and friends love you and care about you, often they don’t really have the knowledge, this group can give you that knowledge. I believe that the groups can help enormously, emotionally, and I think that emotion plays a huge role in the disease.”