In Canada, no cancer is more common to men than prostate cancer. The number of men diagnosed with prostate cancer will likely increase with the aging population, and for many men it will become a chronic, long-term illness. Diverse health issues are encountered by men and their families as a result of prostate cancer and its treatments, many of which influence gender roles and gender relations, and quality of life.
The roles of breadwinner, husband and father are often altered, and pursuits of work and leisure can be undermined. Furthermore, most prostate cancer treatments affect potency and urinary continence, which directly impacts men’s sexuality and intimate relationships. Health and illness information are integral to the well-being of men who have prostate cancer, and prostate cancer support groups have emerged as important community-based resources.
Extending the Role of Prostate Cancer Support Groups in Health Promotion [2011-2013]
Underpinned by the basic premise that prostate cancer support groups have much to offer, we completed a study to better understand how groups operate as a means to describing their role in health promotion. The three-year study was funded by the Canadian Institutes of Health Research (CIHR), Institute of Gender and Health and through their generous support we were able to explore:
- The feasibility of survivor-volunteer led prostate cancer support groups
- Men’s and women’s patterns of engagement with, and perspectives about prostate cancer support groups
- Factors shaping men’s health promotion practices at prostate cancer support groups
Prostate cancer support groups are relatively recent phenomena, and the Vancouver group in British Columbia, established in June 1992, was among the first groups to operate in Canada. We completed a qualitative ethnographic design, including fieldwork, participant observations, and individual interviews with prostate cancer support group attendees. We attended and observed meetings at 16 groups in rural and urban locations. Five groups focused their meetings on psycho-educational presentations, six groups were discussion-based, and five groups combined psycho-education with discussion.
All the groups were led by prostate cancer survivor volunteers and the number of attendees ranged from 4 to 100 people (average = 27). Interviews were completed with 54 men and included were 22 men who held leadership roles (e.g., leader, facilitator, secretary), 16 long-term members (attending for more than 12 months) and 16 short-term members (attending for less than 12 months). These men ranged in age from 53 to 87 years (average = 71 years old). The majority of the men were married, retired and had been treated for prostate cancer. We also interviewed 20 women who attended prostate cancer support group meetings.
To further advance the health promotion efforts of prostate cancer support groups, we have conducted a subsequent mixed-method study, also funded by CIHR.
Advancing the Health Promotion Efforts of Prostate Cancer Support Groups [2012-2016]
This study comprises three sub-projects:
- A survey questionnaire study,
- a focus group study,
- and, based on the findings from the aforementioned two sub-projects, an online prostate cancer support group will be developed [expected to be launched in September 2015].
In study 1, 391 Canadian-based healthcare practitioners – specifically 140 primary physicians, 150 prostate cancer specialists and 101 nurses – completed a survey questionnaire to present their views about prostate cancer support groups during the period of September 2012 to September 2013. While the survey was open to healthcare practitioners across Canada, the majority of the respondents (N=159; 40%) were from British Columbia. The survey questionnaire had 56 items in 6 sets of attitudinal questions to measure healthcare practitioners’ beliefs and perspectives about positive and negative influences of prostate cancer support groups, reasons for attending the groups, the attributes of effective groups and the value of face-to-face as well as online prostate cancer support groups. An open-ended comment section was provided to solicit useful supplementary discussion.
Focus groups interviews of study 2 were conducted in Vancouver, B.C. November 2013 through June 2014 with various sub-groups to describe the key components of online prostate cancer support groups. A total of 5 focus groups were completed, including prostate cancer support group leaders (N=9) and members (N=7), men who have prostate cancer but do not attend support groups (N=5), and partners of men who have prostate cancer (N=4). Participants were invited to identify and discuss crucial components necessary for an effective online prostate cancer support groups.