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The Role of Prostate
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Cancer Promotion
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Executive Summary: 2009
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The Role of Prostate Cancer Support Groups (PCSGs) in Health Promotion
Executive Summary: 2009
T. Gregory Hislop Michael McKenzie University of British Columbia
Centre for Nursing and Health Behaviour Research
(http://www.nahbr.nursing.ubc.ca/), NEXUS (http://www.nexus.ubc.ca/ ) and the
Men Health Research Program (http://www.menshealthresearch.ubc.ca/ ), 2009.
This work has been produced with the support of the Canadian Institutes of Health
Research, Institute of Gender and Health, with addition establishment funds made
available to Dr. John Oliffe by the Michael Smith Foundation for Health Research.
ISBN: 978-0-88865-274-4 print version. ISBN: 978-0-88865-874-6 web version. This report is downloadable from NAHBR at http://www.nahbr.nursing.ubc.ca/
NEXUS at http://www.nexus.ubc.ca/ and the Men's Health Research Program at


Table of Contents: Introduction. 4
Prostate cancer support groups in British Columbia . 4
Methods . 5
Table 1. Prostate cancer support group characteristics. 6
Key Findings . 7

1. Prostate cancer support group sustainability. 7
2. Health promotion and illness demotion. 8
3. The function of humour . 11
4. Women and prostate cancer support groups . 12
5. Canadian newspapers' portrayals of prostate cancer . 15
Recommendations . 17
Publications. 18
Presentations. 19
Acknowledgements. 21
Appendix 1 – BC prostate cancer support groups. 23
References . 27


References
1. Hsing AW, Tsao L, Devesa SS. International trends and patterns of prostate cancer In Canada, no cancer is more common to men than prostate cancer (PCa).1 In 2007, incidence and mortality. Int J Cancer. 2000;85 (1):60–7. 22,300 Canadian men were diagnosed with PCa, and an additional 4,300 died of the 2. Canadian Cancer Society. Canadian cancer statistics; Prostate cancer stats [database on disease.2 Old age is the strongest predictor of PCa development3,4 and it is estimated that the Internet]. 2008 [updated 2008 April 9; cited 2008 August 11]. Available from: the proportion of elderly Canadians (>65 years of age) will increase from 13.2% (4.2 million) of the total population (2005) to 24.5% (9.8 million) by 2036.5 Men are also 3. Albertson P. Prostate disease in older men: Cancer. Hosp Pract. 1997;32(10): 159–66, living longer with PCa, and the death rate continues to be significantly lower than the incidence rate.6 In the absence of a known cause or cure, the number of men diagnosed 4. Kozlowski J, Grayhack J. Carcinoma of the prostate. In: Gillenwater J, Grayhack J, with PCa will increase with the aging population, and for many men it will become a Howards S, Mitchell M, editors. Adult and Pediatric Urology. Vol. 2, 4th ed. Philadelphia: Lippincott Williams and Williams; 2002. p. 1471–1654. chronic, long-term illness.6,7 Diverse health issues are encountered by men and their 5. Statistics Canada (2006). families as a result of PCa and its treatments, many of which influence gender roles and 6. Ellison LF, Stokes J, Gibbons L, Lindsay J, Levy I, Morrison H. Monograph Series on gender relations,8-17 and quality of life.18-20 The roles of breadwinner, husband and father Aging-related Diseases: X. Prostate Cancer. Chronic Diseases in Canada [monograph on are often altered, and pursuits of work and leisure can be undermined.8-9,15-17 the Internet] 2000 [cited 2004 March 5]; 19(1). Available from: http://www.phac- Furthermore, most PCa treatments affect potency and urinary continence, which directly 7. Remzi M, Waldert M, Djavan B. Prostate cancer in the ageing male. J Mens Health affect men's sexuality and intimate relationships.12-13, 14-17, 21-24 Gend. 2004;1(1):47–54. 8. Oliffe JL. In search of a social model of prostate cancer: Finding out about Bronch. In: Health and illness information are integral to the well-being of men who have PCa, and Pearce S, Muller V, editors. Manning the next millennium: Studies in masculinities prostate cancer support groups (PCSGs) have emerged as important community-based Western Australia: Black Swan Press; 2002. p. 69–84. resources. Underpinned by the basic premise that PCSGs have much to offer, we 9. Oliffe JL. Prostate Cancer: Anglo-Australian heterosexual perspectives [dissertation]. designed a study to better understand how groups operate as a means of describing their Geelong (Victoria, Australia): Deakin University; 2003. 10. Oliffe J. Anglo-Australian Masculinities and Trans Rectal Ultrasound Prostate Biopsy role in health promotion. The three-year study was funded by the Canadian Institutes of (TRUS-Bx): Connections and Collisions. Int J Mens Health. 2004;3: 43–60. Health Research (CIHR), Institute of Gender and Health and through their generous 11. Oliffe JL. Trans rectal ultrasound prostate biopsy (TRUS-Bx): Patient perspectives. Urol support we were able to explore: Nurs. 2004;5(4): 395–400. 12. Oliffe JL. Constructions of masculinity following prostatectomy-induced impotence. Soc • the feasibility of survivor-volunteer led PCSGs, Sci Med. 2005; 60(10): 2249–59. 13. Oliffe J. Embodied Masculinity and Androgen Deprivation Therapy. Sociol Health Illn. men's and women's patterns of engagement with, and perspectives about PCSGs, and 14. Chapple A, Ziebland S. Prostate cancer: Embodied experience and perceptions of masculinity. Sociol Health Illn. 2002; 24(6): 820–41. • factors shaping men's health promotion practices at PCSGs. 15. Fergus K, Gray R, Fitch M. Sexual dysfunction and the preservation of manhood: experiences of men with prostate cancer. J Health Psychol. 2002; 7(3): 303–16. The purpose of this report is to summarize the findings drawn from the study and make 16. Gray R, Fitch M, Fergus K, Mykhalovskiy E, Church K. Hegemonic masculinity and the practice and research recommendations. The content shared in this report has been experience of prostate cancer: A narrative approach. Journal of Aging and Identity. 2002;7(1): 43–62. published in academic journals, the ‘Our Voice' PCa survivor magazine and on the 17. Fergus K, Gray R, Fitch M. Active consideration: Conceptualizing patient-provided Canadian Prostate Cancer Network (CPCN) web site (http://www.cpcn.org/) and support for spouse caregivers in the context of prostate cancer. Qual Health Res. 2002;12: presented at conferences, workshops and PCSG meetings in Canada, the USA, Australia 18. Kirschner-Hermanns R, Jakse G. Quality of life following radical prostatectomy. Crit Rev Oncol Hematol. 2002;43: 141-151. 19. Meuleman EJH, Mulders PFA. Erectile function after radical prostatectomy: A review. Prostate Cancer Support Groups in British Columbia
Eur Urol. 2003;43: 95-102. 20. Palmer MH, Fogarty LA, Somerfield MR, Powel LL. Incontinence after prostatectomy: PCSGs are relatively recent phenomena, and the Vancouver group in British Columbia Coping with incontinence after prostate cancer surgery. Oncol Nurs Forum. 2003;30(2): (BC), established June 1992, was among the first groups to operate in Canada. Previous 21. Charmaz K. Identity, dilemmas of chronically ill men. In: Sabo D, Gordon DF, editors. studies of Canadian PCSGs, including an interview study of 12 men mostly in leadership Men's health and illness: Gender, power and the body. Thousand Oaks, CA: Sage roles in Winnipeg, Toronto and Ottawa-based groups, indicated that men derive a sense Publications; 1995. p. 266–91. 22. Navon L, Morag A. Advanced prostate cancer patients' ways of coping with the hormonal therapy's effect on body, sexuality, and spousal ties, Qual Health Res. * Please refer to Publications and Presentations (page 18 through 20) for specific details. 2003;13(10):1378–92. of meaning and purpose through attending support group meetings.25 A survey of men Vernon PSA (Prostate Cancer Support & Awareness) Group
attending a professionally-led Montreal-based PCSG indicated that the sharing of PCa Contact: Ed Eyford 250-545-6220 or Lloyd Mitchell 250-549-2362 experiences with others gave men reassurance, helped alleviate anxiety, and provided a Email: eaeyford@telus.net or lloyd-marion@shaw.ca more positive outlook and a perception of being actively involved in their treatment.26 When: The 4th Monday of Jan., Feb., Mar., Apr., May, Sept., Oct., & Nov. Time: 7:30 to 9:30 p.m. Both studies recommended further research to more fully understand how PCSGs operate Where: The People Place 104–3402 27th Avenue in Canada, and in 2005 we were able to build upon these earlier studies. Victoria PSA (Prostate Cancer Support Association)
Contact: David Durksen or Andrew Godon 250-382-6531 Email: ddurksen@coppervalley.bc.ca or andrew.godon@gmail.com When: The 2nd Tuesday of each month Time: 7:00 to 9:00 p.m. Study design
Where: Begbie Hall Royal Jubilee Hospital grounds, 2101 Richmond Ave. Victoria A qualitative ethnographic design, including fieldwork, participant observations, and individual interviews provided an effective way to establish understandings about White Rock/South Surrey Prostate Cancer Support & Awareness Group
PCSGs.27 The primary characteristic of the study was its commitment to cultural Contact: John Morton 604-538-0011 interpretations of the practices and social norms at the PCSGs.28-29 Email: johnmorton@shaw.ca When: No Longer meeting but John is willing to take calls. We attended and observed meetings at 16 groups in diverse rural and urban locations in BC, Canada. The PCSG meeting details based on fieldwork and participant observations are included in Table 1. 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 PCa survivor volunteers and the number of attendees ranged from 4 to 100 people (M = 27). Potential interviewees volunteered from each PCSG and from that pool we interviewed 54 men with varying group associations. Specifically, 22 men held leadership roles (e.g., leader, facilitator, secretary), 16 were long-term members (attending for more than 12 months) and 16 were short-term members (attending for less than 12 months); all completed individual semi- structured interviews. In total, the 54 interviewees accounted for approximately 16% of all the men observed at the group meetings, and they ranged in age from 53 to 87 years (M = 71.27 years; SD = 8.52 years) and had attended PCSGs for an average of 5 years (SD = 4 years)†. The majority of the men were married (n = 51) and retired (n = 44). The interviewee's mean time since PCa diagnosis was 6 years (SD = 5 years)†. Three men had not been treated; of the 51 men who had been treated, 15 had a prostatectomy, 6 received androgen deprivation therapy, 4 brachytherapy, 4 radiation therapy, and 22 a combination thereof. We also expected to recruit one woman from each PCSG to participate in the interview component of the study. However, many women were eager to talk with us, and we interviewed 20 women from 11 of the 16 groups. On average, 5.6 (21%) of the attendees at each of the PCSG meetings that we observed were women. Women interviewees self-identified as Anglo-Canadian (n = 14) and Northern European (n = 6), ranged in age from 54 to 84 years (M = 68.5 years), and most were retired (n = 15). Most participants (n = 16) attended with their husbands and, at the time of the interview, had attended group meetings from 6 months to 13 years (M = 6.5 years). The women's demographic data reflected what was typically observed at the group meetings. † Length of time attending the group varied widely, ranging from 1 month to 13 years as did time since diagnosis (1 month to 19 years). Prince Rupert Prostate Cancer Support & Awareness Group
Contact: Judy Rea 250-622-6533 When: The 1st Wednesday of each month 9/16 – one leader Where: Health Unit Qualicum Beach Prostate Cancer Support & Awareness Group
Contact: Jack Rossiter 250-951-2083 When: The 1st Tuesday of each month Time: 7:00 to 9:00 p.m. Where: St Stephen Church ears lish
Quesnel Prostate Cancer Support & Awareness Group
Contact: Ron Campbell 250-992-2726 Email: ronbetcampbell@shaw.ca When: meet on an as needs basis Where: 332 Front St., Quesnel Revelstoke Prostate Cancer Support Group
Contact: Darrell Goodman 250-837-3663 Email: mercury54@telus.net When: under development (some fellows meet casually at a coffee shop) unicipal ealth C ospital Time: Being arranged – call Darrell Salts Spring Island Prostate Cancer Support & Awareness Group
Contact: Chris Rieder 250-537-2720 orm haring
Email: bigcedar@shaw.ca When: The 3rd Tuesday of each month Time: 1:30 to 3:30 p.m. Where: Farmers' Institute Sunshine Coast Pc Support Awareness Group
Contact: John Keates, Chair 604-885-4181 roup characteristics
Email: kkeates@dccnet.com When: The 1st Tuesday M urationD (M
Where: St. John's United Church, Davis Bay, Sechelt ancer Society
Surrey Prostate Cancer Support & Awareness Group
Contact: Leno Zecchel 604-596-2640 or George Main 604-574-5554 Email: lzecchel@uniserve.com or gcmain@bcprostatecancer.org When: The last Saturday of each month (not December) anadian C
Time: 10:00 am to 12:00 noon Where: Cafeteria, Surrey Memorial Hospital 13750 96 Ave. Surrey, BC Vancouver PSA (Prostate Cancer Support & Awareness) Group
Contact:Len Gross 604- 434-2100 or Gordon Dunn 604-739-5900 Email: lengross@shaw.ca or gordond2@smartt.com ffice provided by C
When: The 1st Thursday of each month Table 1. Prostate Cancer Support G
Time: 11:00 a.m. to 1:00 p.m. 428 (100% 4 – 100 26.8 25.0 Where: Canadian Cancer Society Board Room. 565 West 10th Ave. Vancouver.



Cowichan Valley Prostate Cancer Support & Awareness Group
Contact: Gordon Thomas 250-743-6960 The key study findings related to (1) group sustainability, (2) health promotion strategies, Email: gandmthomas@shaw.ca When: The last Thursday of each month (3) the use of humour and (4) the roles of women in PCSGs. We also assessed the PCa Time: 7:00 to 9:00 p.m. information shared by Canadian newspapers to better understand how that medium Where: Lecture Room, Cowichan Dist. Hospital, Duncan messages the public about PCa. East Kootenay Pc Support Group
Contact: Peter Wightman 250-427-4822 or Kevin Higgins 250-427-3322 1. Prostate cancer support group sustainability
Email: rosehawk@shaw.ca OR kevbevhiggins@cyberlink.bc.ca When: The 3rd Wednesday of each month Early on in the study we noted that the groups often struggled and some groups had Time: 7:00 to 8:30 p.m. Where: College of the Rockies, Cranbrook Campus stopped meeting; while others were enduring, meeting regularly, and attracting large numbers of attendees. While collecting data from the 16 groups in this study, we became Kamloops Prostate Cancer Support & Awareness Group
aware of 9 BC-based PCSGs that had recently disbanded, and many of the groups that we Contact: Larry Reynolds 250-376-4011 attended were challenged to attract and retain members, maintain cohesive leadership, Email: larube_kam@shaw.ca and provide up-to-date information in a rapidly changing field. Group sustainability was When: Once a month (Please call 250-374-9188 for more info.) formally investigated to better understand these issues. Where: Interior Health meeting room at 450 Lansdowne St Kelowna Prostate Cancer Support & Awareness Group
While collecting data from Contact: Bren Witt 250-764-1031 Email: sbren@bcprostatecancer.org the 16 groups for this study, When: The 2nd Saturday of each month we became aware of 9 BC- Time: 9:00 a.m. to 11:00 noon Where: Kelowna Health Centre, 1340 Ellis Street. based PCSGs that had recently disbanded, and many of the groups that we Nanaimo Prostate Cancer Support Group
Contact: Malcolm W. Reville 250-756-3116 attended were challenged Email: mmmjo@shaw.ca to attract and retain When: The 2nd Tuesday of each month Where: Nanaimo Cancer Society Leadership and management
North Shore Prostate Cancer Support & Awareness Group
As others have observed in professionally-led cancer support groups,30 the success and Contact: Tom Sayle 604-929-3125 Email: teeandjay@shaw.ca longevity of PCSGs is reliant on effective leadership and management. PCSG leadership When: The 4th Tuesday of each month January to November (November – social night) no can be challenging for lay volunteers. The groups attract men and women with a wide meeting in December diversity of needs that fluctuate considerably from one meeting to the next. Cohesive Time: 7:00 to 9:00 p.m. leadership, shared management, and specific group facilitation strategies were integral to Where: Lions Gate Hospital, Basement Auditorium meeting the needs of attendees and fostering their camaraderie and commitment to the Parksville (DISTRICT 69) Prostate Cancer Support & Awareness Group
group. Group members were adamant that PCSGs needed to be survivor-led, yet being a Contact: Doug Bamford 250-954-0887 group leader required significant time, energy, and commitment that only a few men were Email: dbamford@shaw.ca able or willing to provide. Similar to problems described by both professional and When: The 1st Wednesday of each month nonprofessional leaders of cancer support groups,31 PCSGs' dependence on one or two leaders and lack of defined terms and tenure, meant that group leaders were at risk for Where: 361 Willow Street, Parksville, B.C. burnout. In these situations, the long-term viability of the group was uncertain. Finding Pender Island Prostate Cancer Support & Awareness Group
ways to support the leadership of PCSGs and the development of succession planning Contact: Jim Dunn 250-629-3273 was critical to ensuring group sustainability. Email: jsdunn@shaw.ca When: No Longer meets but Jim is willing to take calls.


Appendix 1 - British Columbian Prostate Cancer Support Groups
Collaboration or emancipation
PCSG sustainability was also influenced by linkages with professional organizations. ProCan Support Web site & Publication
One option for the PCSGs in this study was to affiliate with cancer fundraising (A Virtual BC Prostate Cancer Support Group) agencies. However, concerns were expressed by some PCSG attendees that the Contact: George Main 604-574-5554 Email: gcmain@bcprostatecancer.org groups would end up working for organizations that dictated the terms and conditions Where: www.procansupport.com under which they operated. Many PCSGs were resistant to anything resembling a "takeover" or "branding" by organizations that did not have the capacity to provide Abbotsford PSA (Prostate Cancer Support & Awareness) Group
resources to the groups and willingness to negotiate mutually acceptable terms of Contact: Val Strijack 604-856-5863 or Bill Lantz 604-858-1826 Email: Val_strijack@telus.net or billevelyn@shaw.ca When: The 3rd Thursday of each month (no meetings July/August and December) Time: 7:30 to 9:30 p.m. Where: Peace Lutheran Church, at Ware and Marshall Rd. Abbotsford, B.C. Ashcroft "Men's Health Matters" Group
Contact: David Durksen 250-453-9864 – cell 250-457-3226 Email: ddurksen@coppervalley.bc.ca When: The 2nd Tuesday of each month Where: Ashcroft Health Centre (Hospital) Burnaby/New Westminster Prostate Cancer Support & Awareness Group
(East Vancouver, Burnaby, New Westminster) Contact: Ian Baxter 604-421-8813 Email: ibbaxter@telus.net When: The 1st Saturday of each month Time: 10:00 to 12:00 Noon The study findings about PCSG sustainability are available in more detail at: Where: 2nd floor Education Room ‘A'. Burnaby General Hospital - 3935 Kincaid Ave. Oliffe, J.L., Halpin, M., Bottorff, J.L., Hislop, T.G., McKenzie, M. & Mroz, L. (2008). How prostate cancer support groups do and do not survive: A
Campbell River/West Coast Prostate Awareness Group
British Columbian perspective. American Journal of Men's Health, 2(2),
Contact: Frank Greens 250-923-1357 or 250-286-9696, Merv Rotzien 250-926-0076 or Al Hodgkinson 250-923-1357 Email: hudsey@telus.net (Merv) When: The 3rd Tuesday of each month Time: 7:00 p.m. – 9:30 p.m. Where: Altrusa House, # 12 142 Larwood Road, Campbell River 2. Health promotion and illness demotion
Comox Valley Prostate Cancer Support & Awareness Group
Contact: Brian Lunn 250-338-8235 There is strong evidence that men are reluctant to engage with health promotion Email: kenya-cottage@shaw.ca or prostatecancer@shaw.ca programs; typically men react to severe symptoms rather than attempt to maintain their Web site is www.members.shaw.ca/prostatecancer/ health, and are more likely to deny than discuss illness-related issues.32 Men at PCSGs When: The 2nd Monday of each month (except July & August) October this year is the revealed an intriguing exception to these longstanding commentaries by routinely 20th, the 3rd Monday, to avoid Thanksgiving Day Time: 7:30 to 9:00 p.m. discussing ordinarily private illness experiences and engaging with self-health. We Where: Community Health Centre, 961a England Ave., Courtenay, B. C. observed how an environment conducive to men's talk was established to normalize PCa, and to promote individuals and the collective health of group members. Group members Coquitlam Prostate Cancer Support & Awareness Group
often focused on the facts (e.g., the latest biomedical research) and figures (e.g., Prostate Contact: Norm Sherling 604-936-8703 Specific Antigen [PSA] and Gleason biopsy scores) and this enabled many men to Email: nsherling@shaw.ca When: The 1st Tuesday of each month objectify and position their PCa as a manageable disease. At the same time, through Time: 7:00 to 9:00 p.m. group discussions, the men shared their health promotion practices. Three PCSG Where: Pinetree Community Centre, 1260 Pinetree Way. Coquitlam, B.C. strategies are outlined to detail the specificities of how PCSGs achieved this activity. Living examples of healthy men
Administrative Staff
Participants drew reassurances from survivors who attended the An environment conducive to meetings. Many men explained how they observed the practices men's talk was established to and progress of other men as a means to engage with and, in normalize PCa, and to promote some cases, assess their own health. This was due, in part, to the The administrative assistance afforded by the the individual and collective complexities and ambiguities associated with the science of UBC School of Nursing, the Centre for Nursing health of group members. PCa. As such, the presence of healthy men at the groups and Health Behaviour Research (NAHBR) and provided important "proof" and "hope" that survival was NEXUS were instrumental in completing this possible, regardless of the specificities of men's PCa research. Special thanks to Merrilee Hughes, biomarkers. For example, an 81-year-old participant connected Joanna Ho, Mary Sun, Joyce Wu, Gladys with another man at the monthly PCSG meetings who had the Tecson, Meghan Mathieson and Christina Han same treatment and similar PCa biomarkers. When the man for ALL their help. missed a few meetings the participant telephoned him at home to make sure he was doing well: Investigative Team
John Oliffe, RN, MEd, PhD. Lead Investigator and
Associate Professor, School of Nursing, University of I phoned him and talked to his wife. And I said ‘Is [support group British Columbia. Email john.oliffe@nursing.ubc.ca member] sick? ‘ And she said, ‘No he's cross-country skiing'…and I said, ‘Well, if he can do it, I can do it too'…This is extremely important to me that you find a guy that has a Gleason of 9, that's Joan Bottorff, RN, PhD, FCAHS. Co-investigator,
gone through the same treatment I'm going through now a couple Professor of Nursing, and Chair in Health Promotion and years later because his was 3 years ago. He's doing really good. Cancer Prevention at the University of British Columbia, He's cross-country skiing. T. Gregory Hislop, MSc, MD, CM. Co-investigator and
Mixing health and illness information
research consultant. His research focuses on cancer The ability of PCSGs to mix PCa and health information afforded the "light and shade" epidemiology, diet and on the development and to maintain the men's interest without overwhelming them. Rather than an exclusive evaluation of cancer screening programs. focus on PCa, opportunities were available for the men to promote their health and well- being rather than to remedy or ruminate on an existing PCa. Many men detailed specific dietary supplements or strategies for modifying the consumption of potentially beneficial (i.e., fruits/vegetables) and detrimental (i.e., sugar, alcohol, coffee) foods. Michael McKenzie, MD, FRCPC. Co-investigator,
Complementary and alternative medicines were also discussed as a means to maintaining radiation oncologist and member of The Genitourinary and improving health. A 74-year-old man who had been attending group meetings for Tumour Site Group at the British Columbia Cancer less than 12 months talked about the impact of group conversations, specifically citing meditation as key to reducing his PCa induced anxiety: A lot of the apprehension, the trauma that is associated with first hearing about cancer, a couple of fellows there talked about meditation and I was never big on that, but I do that now. Trajectory and problem-specific information
Information was solicited by and tailored to individuals to counter specific problems based on where they were within the illness trajectory. The most common example of tailored information related to treatment decision-making for newly diagnosed men who were deciding if and what treatment they would have. Group members were quick to Special thanks to the PCSGs for welcoming us to their meetings, endorsing this study, share their perspectives, but careful to be impartial about the treatment options. Some and assisting us in furthering our understanding of men's health and PCa. Sincere thanks larger PCSGs formed treatment sub-groups (i.e., prostatectomy, radiation therapy, to the men and women who participated in the individual interview portion of this study. brachytherapy, etc.) which newly diagnosed men could access to discuss specific In addition, we would like to thank the Canadian Prostate Cancer Network (CPCN at information. A 72-year-old participant who had recently undergone brachytherapy http://www.cpcn.org/) and Bob Shiell, Murray Gordon and Wally Seely for their explained that he was able to provide more information than otherwise would have been assistance. Thanks to the British Columbia Foundation for Prostate Disease (BCFPD at available to a man wanting to make a treatment decision: http://www.bcprostatecancer.org/) especially Ted Butterfield, Ian Baxter, Val Strijack, Dan Cohen, Len Gross, George Main, Don Stewart and Bren Witt for their ongoing support. The CPCN and BCFPD's inclusion of us and endorsement of the study at national and provincial meetings ensured the feasibility of completing the research. The It set his mind at ease because he was finally able to talk to CPCN published findings drawn from this study on their web site and in the Our Voice, somebody who has been through the brachytherapy process. Prior newsletter, thus greatly assisting our knowledge dissemination efforts. The expertise and to that, the information he had, had come from the urologist and hard work of the investigative team, research staff and administrators was also integral to his family doctor who have never gone through the whole process. achieving the deliverables derived from this research. Funding Agencies
This study was made possible by the generous support of the Canadian Institutes of Health Research (CIHR); Institute of Gender and Health; #11R91563). Additional career support for Dr. John Oliffe was provided by the CIHR Institute of Gender and Health (New Investigator award). Additional project funding and career support for Dr. John Oliffe was also made available by the Michael Smith Foundation for Health Research (MSFHR) Scholar award. Coalition Advisory Committee
A Coalition Advisory Committee was a vital component of this research. The committee members were: Mr. Len Gross, Ms. Diane Marshall, Ms. Cheri Van Patten and Mr. Bren Witt. These dedicated individuals provided key input regarding study findings and advised us on how best to disseminate findings to key stakeholders. As future projects are developed, we are seeking the committee's advice on how best to continue our work and apply the study findings to extend and promote the work of PCSGs. The study findings about health promotion and illness demotion are available in detail at: Research Staff
Oliffe, J.L., Gerbrandt, J., Bottorff, J.L., & Hislop, T.G. (In Press). Health
Sincere thanks to the project research staff who assisted on the project in various promotion and illness demotion at prostate cancer support groups. Health
capacities including: project management (Michael Halpin and Melanie Phillips), data Promotion Practice. collection (Lawrence Mroz, Graham McLean, Michael Halpin, Joanne Carey and Mary Kelly) and data synthesis and manuscript preparation (Julieta Gerbrandt, Michael Halpin, Melanie Phillips, Graham McLean, Lawrence Mroz, Tina Thornton, Valerie Oglov, Kristy Hoyak and Anna Chan). 3. The function of humour
Oliffe, J.L. (July, 2007). Sustainability and PCSGs. Presentation at the Victoria Prostate Cancer Support Group, Victoria, British Columbia, Canada. Psychosocial benefits, including improved mood and mental health, and increased quality of life, have been reported among men who routinely attend PCSG meetings.33-36 We Oliffe, J.L. (June, 2007). Qualitative research methods for clinicians. Invited workshop at noticed that humour was frequently a part of the groups' interactions, and this prompted Vancouver Coastal Health, June, Vancouver, British Columbia, Canada. us to formally examine the function of humour at PCSGs. The study findings revealed how humour could disarm men's stoicism and mark the boundaries for providing and Oliffe, J.L., Halpin, M., Bottorff, J.L., Mroz, L., Hislop, G., & McKenzie, M. (June, receiving mutual help. 2007). The sustainability of prostate cancer support groups: Are the grassroots burning? Paper presented at the 19th IUHPE World Conference on Health Promotion and Health Education. Vancouver, British Columbia, Canada. Disarming stoicism
By opening with a joke or inserting a humourous remark, regardless of whether it brought Oliffe, J.L., Bottorff, J.L., Halpin, M., Phillips, M., McLean, G., & Mroz, L. (June, shrieks of laughter or a few sniggers, the men were able to manufacture something that 2007). He said, she said: Women's commentary about men who attend prostate cancer others could actively engage with and react to. Humour often subtly disarmed stoicism in support groups (PCSGs). Paper presented at the 19th IUHPE World Conference on ways that did not necessarily demand talk from each and every man who attended the Health Promotion and Health Education. Vancouver, British Columbia, Canada. group. Instead, a shared joke or laughter constituted a group activity, and there was often a central character(s) in each who enjoyed sharing ‘their' humour as a remedy. A 74- Bottorff, J.L., Oliffe, J.L., Halpin, M., Mroz, L., McLean, G., & Phillips, M. (March, year-old man explained that understanding and empathy existed within the group and 2007). The benefits, roles and reasons for women attending prostate cancer support humour was used to signal that, and to reassure newcomers that their cancer and group- groups. Paper presented at the Canadian Conference on Men's Health, Victoria, British related anxiety would dissipate over time: Columbia, Canada. There are a couple of fellows there that didn't say a word all night. Halpin, M., Phillips, M., & Oliffe, J.L. (March, 2007). Prostate cancer in the Canadian I could tell by their posture that they have just been diagnosed and news media: A case of inconsistent messaging? Paper presented at the Canadian they were obviously terrified as I was when I was first diagnosed. Conference on Men's Health, Victoria, British Columbia, Canada. There's a lot of anxiety there and those fellows were not prepared to open up. Others were there who have been through this, sort of Oliffe, J.L. (March, 2007). Prostate cancer support groups in British Columbia. Keynote around the road on this thing. Some of them were quite humorous presentation at the Annual General Meeting and Banquet, British Columbia Foundation about this and that was a nice balance between these guys. for Prostate Disease. Vancouver, British Columbia, Canada. Oliffe, J.L. (October, 2006). Study outline – the role of PCSGs in health promotion. Presentation at the Surrey Prostate Cancer Support Group, Surrey, British Columbia, A shared joke or laughter constituted a group activity, and there was often Oliffe, J.L. (April, 2006). Preliminary findings – PCSG sustainability. Presentation at the a central character(s) in each who Vancouver Prostate Cancer Support Group, Vancouver, British Columbia, Canada. enjoyed sharing ‘their' humour as a Oliffe, J.L. (September, 2005). The role of PCSGs in health promotion – an overview and invitation to participate in a new study. Presentation at the first BC Foundation for Prostate Disease Workshop, Vancouver General Hospital, Vancouver, British Columbia, Marking the boundaries
Men also used humour to introduce potentially sensitive PCa issues such as urinary incontinence, sexual dysfunction, and death. A quip or joke was often put forward to gauge the group's interest, and to assess whether the discussion of ordinarily taboo topics was permissible. A long group discussion about treating erectile dysfunction (ED) took place after a 66-year-old participant who had been attending PCSG meetings for three years signalled his intact male libido but acknowledged the challenges of successfully I was talking about using Viagra to see whether it will help, well it gave me a headache—maybe that's a good thing!? There was Oliffe, J.L. (May, 2009). Findings from our PCSG study. Presentation at the Victoria humour about that, that went into the room. It's kind of light- Prostate Cancer Support Group, Victoria, British Columbia, Canada. hearted and people are trying to make the best of it, of a bad joke. Oliffe, J.L. (March, 2009). Findings from our PCSG study. Presentation at the Surrey Prostate Cancer Support Group, Surrey, British Columbia, Canada. Although the humour was well-intended, many group leaders were aware of the need to Oliffe, J.L. (December, 2008). Your PCSG and Active Surveillance. Presentation to the strategize the use of humour to ensure the comfort of all attendees. A 65-year-old group Calgary PCSG. Calgary, Canada. leader of 10 years explained: Oliffe, J.L. (December, 2008). PSCGs – What next? Presentation to the PCSGs Alberta Board of Directors. Calgary, Canada. You've got to be very careful. The humour is clean, non- Oliffe, J.L. (October, 2008). Gendering prostate cancer in the context of support groups. judgmental and you've got to be very, very careful on how you Panel Keynote presented at the Spanish Ministry of Health, Women's Health Observatory deliver the humour…You've got to know your group and what Workshop, Madrid, Spain. people are in the group. The people that I was giving a bad time to, [they] enjoyed the bantering back and forth…They would egg me Oliffe, J.L. (August, 2008). The role of humour at PCSGs. Presentation at the Vancouver on and I would egg them on and it was fun and they loved it. Other Prostate Cancer Support Group, Vancouver, British Columbia, Canada. individuals, you can't do that. Oliffe, J.L. (June, 2008). Qualitative research methods for clinicians. Invited workshop at Vancouver Coastal Health, Vancouver, British Columbia, Canada. Our analyses revealed how humour can be integral to legitimizing men's support group Oliffe, J.L., Ogrodniczuk, J., Bottorff, J.L., Hislop, T. G., & Halpin, M. (May, 2008). involvement and engagement with self-health. A sense of humour can give a group Connecting humor, health and masculinities at prostate cancer support groups. Paper member a tool for expressing complicated emotional states, while the wit itself may buoy presented at the Canadian Association of Psychosocial Oncology, Halifax, Nova Scotia, self-esteem and silence self-criticism. In the PCSG settings, humour can regulate the emotional atmosphere by enlivening social interactions. Thus, the sharing of laughter is an indication of a degree of shared safety and establishes an intimacy in interpersonal Bottorff, J.L., Oliffe, J.L., Halpin, M., Mroz, L., McLean, G., & Phillips, M. (May, relations and facilitates communication by, for example, promoting cohesion among 2008). Women attending prostate cancer support groups: The gender connect? Paper group members. Additionally, humour itself can be therapeutic because of the way it presented at the Canadian Association of Psychosocial Oncology, Halifax, Nova Scotia, Oliffe, J.L. (October, 2007). International perspectives in men's health research. Panel Member, Australian National Men's Health Conference. Adelaide, South Australia. The study findings about the use of humour at PCSGs are available in more detail at: Oliffe, J.L. (October, 2007). Empirical, methodological and theoretical: The men's health trifector. Invited Workshop, Australian National Men's Health Conference. Adelaide, Oliffe, J.L., Ogrodniczuk, J., Bottorff, J.L., Hislop, T.G., & Halpin, M. (In South Australia. Press) Connecting humor, health and masculinities at prostate cancer
support groups. Psycho-Oncology.
Oliffe, J.L. (October, 2007). Prostate cancer support groups: Canadian group sustainability. Keynote presentation at Prostate Cancer Foundation of Australia, Public Lecture. Adelaide, South Australia. 4. Women and prostate cancer support groups
Oliffe, J.L. (September, 2007). Prostate cancer support groups – How are we doing? Keynote presentation at the Canadian Prostate Cancer Network (CPCN) and Canadian Women influence their spouses' experiences of PCa, and are also significantly affected Prostate Cancer Research Initiative (CPCRI) Conference. Toronto, Ontario, Canada. by living with a partner who has PCa. So much so, that PCa has emerged as a "couple's illness"37-39 in which the disease, as well as its treatments, affect gender identities and relations across the entire illness trajectory.10,12-14,17 We focused our analysis to better • How can on-line PCSGs inform and influence PCa consumers and service understand how PCa was situated and negotiated as a ‘couple's illness', by describing women's participation at PCSGs. The reasons why women attended the groups and the roles they played at group meetings are detailed below. • How might professionally facilitated psychosocial PCa interventions be administered on-line and at face-to-face PCSGs? Reasons for attending
Despite feeling anxious and wondering whether they would fit in at a men's group • What community-based PCa supports will best meet the needs of women? 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: Oliffe, J.L., Halpin, M., Bottorff, J.L., Hislop, T.G., McKenzie, M., & Mroz, L. (2008). How prostate cancer support groups do and do not survive: A British Columbian I went to support my husband because he was newly diagnosed but perspective. American Journal of Men's Health, 2(2), 143–155. I also was quite overwhelmed by the amount of information there was….So I found that maybe the support group there would be an Oliffe, J.L., Gerbrandt, J., Bottorff, J.L., & Hislop, T.G. (In Press). Health promotion and opportunity to begin to make more sense of …the medical aspect of illness demotion at prostate cancer support groups. Health Promotion Practice. 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 Oliffe, J.L., Ogrodniczuk, J., Bottorff, J.L., Hislop, T.G., & Halpin, M. (In Press) husband but hopefully to discuss things with other women. Connecting humor, health and masculinities at prostate cancer support groups. Psycho- Oncology. Bottorff, J.L., Oliffe, J.L., Halpin, M., Phillips, M., McLean, G., & Mroz, L. (2008). Women and prostate cancer support groups: The gender connect? Social Science and Medicine, 66, 1217–1227. Halpin, M., Phillips, M., & Oliffe, J.L. (In Press) Prostate cancer in Canadian newspaper media: Representations of illness, disease and masculinities. Sociology of Health and Work in progress:
Continued attendance centered on the women's need to manage their experience of their partner's illness, as well as to give back to the group as a couple. A 75-year-old woman Oliffe, J.L., Bottorff, J.L., McKenzie., M., Hislop, T.G., Gerbrandt, J., & Oglov, V. who had been attending group meetings for 10 years explained: Prostate cancer support groups, health literacy and consumerism: Are community-based volunteers redefining older men's health? I only go with him….Every once in a while he would say, "I do not know why I am going anymore." I always come back with, "Well it Oliffe, J.L., Bottorff, J.L., Austin, D., Hislop, T.G., & McKenzie, M. Taking care of is for the other fellows that are there, the new people, because you business: Prostate cancer support group leaders. are a survivor." I think it is important for them to hear the survivors….I sometimes wonder why we go too, but it is for the Oliffe, J.L., Haines, R., Bottorff, J.L., & Phillips, M. Women's commentaries about prostate cancer survivors' health and illness practices. Oliffe, J.L., & Bottorff, J.L. Couples at Prostate cancer support groups: A gender Women's roles
relations analysis. 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. Although these women downplayed their contributions, they were vital to the social life. A 60-year-old woman, who had attended group meetings with her husband for ten years, explained her role: Implications for practice
I'm the refreshment lady…The tea, coffee, actually I used to make The findings detailed in this report enabled us to thoughtfully consider how to maximize everything at one time…they had a meeting, I wasn't there, the impact of PCSGs. As such, the following recommendations are offered as strategies [laughs] and they voted me to do it [laughter]…Because there's a to ensure the continuation and growth of PCSGs: lot of people that didn't want to do it, it doesn't have to be the woman, it could be the guys but they didn't want to do the coffee, • Although PCSGs will not appeal to all men, using the word "support" is ‘How much coffee do I put in, how much water do I put in?' you associated with indebtedness or weakness and may discourage men from know, and they'd really stress themselves out about it. attending. We recommend a name change to mutual help or men's health to
more accurately reflect the core business of education and information and
attract more men to group meetings. • The World Wide Web offers an important medium to extend and promote the
work of PCSGs. That said, the ultimate success of virtual PCSGs is contingent
upon having sufficient resources to design, deliver, and regularly evaluate and update information in ways that men can easily access and understand, and explain to others. • The permission of others at PCSGs to talk about health and illness afforded men Women also operated as background supporters, wanting to be there for their husbands
the freedom to actively engage in self-health. Therefore, men's health promoters without disrupting the men's ownership of the group because they believed this would need to tailor content and encourage and expect men to talk, rather than
inhibit men's support for each other. Positioning themselves in this way helped minimize disseminating generic information or telling men how to look after their health the women's anxiety about attending a men's group, and provided a way to encourage and respond to illness. men's self-disclosure. A 65-year-old woman who had been attending group meetings for one year explained that during group discussions and the associated question period, she • Humour played a central role in how men interacted at the groups and this might
remained quiet because her husband was the one who needed to talk: also be useful in the delivery of other men's health promotion programs.
Balancing PCa information with discussions about healthful practices
maintained the attendee's interest, but avoided overloading men with information. I don't get involved with the questioning because it's [husband] This was important because rather than an exclusive focus on PCa, many that has it, and he's the one that knows how he feels so if he has a opportunities existed for men to link health and illness and promote their health question he'll ask but I don't really say anything. for reasons other than heeding expert advice or seeking a PCa remedy. • The needs of female partners are underserved by professional health care
services and, as such, women's PCSGs might be an important additional resource Conversely, some women explicitly positioned the experience of PCa as a couple's to meet the needs of a greater number of women. illness and adopted the role of a cancer co-survivor. These women shared and solicited
psychosocial 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 Future Research
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: We recommend that the following research questions be addressed to extend and promote the work of PCSGs in Canada: • What are health care professionals' connections to, expectations of, and recommendations for PCSGs? I had a need to talk desperately, I had my friends who had empathy The good fight
and caring but they had no idea what I was going through and if Ideologies emphasizing courage in men's PCa battles predominated in 117 articles any of them were losing their husbands, they were losing them (28%), and the commentaries routinely featured men in sports, politics, and the through divorce not this. As much as your family and friends love entertainment industry to detail the specificities of the good fight. Typically, men's you and care about you, often they don't really have the achievements were detailed and PCa was background but linked to men's willingness to knowledge, this group can give you that knowledge. I believe that fight the cancer across the illness trajectory. the groups can help enormously, emotionally, and I think that emotion plays a huge role in the disease. I think people Self-health and public awareness
underestimate the importance of it. Sixty-three articles (15%) detailed dietary intervention and supplementation strategies including the integration of foods containing lycopene and other nutrients proposed to be implicated in delaying cancers – including PCa development. The articles lacked detail The study findings about women and PCSGs are available in more detail at: but pointed to specific foods as health- enhancing and cancer- preventing. Some articles indicated that men should take responsibility for their health; however, it was women Bottorff, J.L., Oliffe, J.L., Halpin, M., Phillips, M. McLean, G., & Mroz, L. who were most often portrayed as the lynchpin in surveying and informing men's health (2008). Women and prostate cancer support groups: The gender connect?
practices. An example of this included an article describing how Theresa Heinz-Kerry's Social Science and Medicine, 66, 1217–1227. medical knowledge – and knowledge of her husband's health – may have saved her Ms Kerry knew enough to have her husband's blood retested for C- reactive protein, a little-known indicator of potentially cancerous 5. Canadian newspapers' portrayals of PCa
inflammation. Two days before Christmas, his doctor told Mr. [John] Kerry his wife's fears were well placed; he was in the very Providing information to men and their families is the primary role of PCSGs. However, early stages of PCa.41 there is implicit and sometimes explicit concern that "lay" perspectives might be inaccurate or biased. In thinking about where else men and their partners might access Overall, our analyses indicated that PCa is depicted most often in commerce based PCa information we decided to systematically analyze how two national Canadian articles and stories about men's courage. In addition, there is little consistency in the PCa newspapers, The Globe and Mail and the National Post, portray PCa. Articles published screening and treatment information presented, nor are there directions or strategies between 2001 and 2006 that contained the term "prostate cancer" in the title or text were provided to guide men about how best to engage in self-health. collected and a total of 417 PCa articles were analyzed to reveal the following three Treatment imperative
The study findings about PCa and Canadian newspapers are available in more detail at: PCa screening and treatment technologies were detailed in 178 (42%) articles. Seventy- two articles mentioned the prostate specific antigen (PSA); however, uncertainty about Halpin, M., Phillips, M., & Oliffe, J.L. (In Press) Prostate cancer in
the efficacy of the PSA test was discussed in approximately half of the articles (n = 35). Canadian newspaper media: Representations of illness, disease and
In terms of PCa treatment modalities, articles focused on hormone treatments (n = 64), masculinities. Sociology of Health and Illness.
surgery (n = 29), radiation therapy (n = 29) and brachytherapy (n = 10). The vast majority of these articles appeared in the business section, and hormone treatments (as the most expensive PCa therapy heavily subsidized by the federal government) were often linked to pharmaceutical companies' stock market prices. When PCa treatment side effects, including erectile dysfunction (ED) were discussed, typically it was combined with the marketing of pharmaceutical remedies. For example, the unveiling of Viagra's™ competitor, Cialis™ detailed the testimonial of a 54-year-old man who had developed ED following PCa surgery. The advantages of Cialis'™ longer half-life were highlighted in the man's testimonial, "because it lasts for 36 hours, [sex] doesn't have to be a planned event, which is very attractive. It leads you back to a much more normal life".40 I had a need to talk desperately, I had my friends who had empathy The good fight
and caring but they had no idea what I was going through and if Ideologies emphasizing courage in men's PCa battles predominated in 117 articles any of them were losing their husbands, they were losing them (28%), and the commentaries routinely featured men in sports, politics, and the through divorce not this. As much as your family and friends love entertainment industry to detail the specificities of the good fight. Typically, men's you and care about you, often they don't really have the achievements were detailed and PCa was background but linked to men's willingness to knowledge, this group can give you that knowledge. I believe that fight the cancer across the illness trajectory. the groups can help enormously, emotionally, and I think that emotion plays a huge role in the disease. I think people Self-health and public awareness
underestimate the importance of it. Sixty-three articles (15%) detailed dietary intervention and supplementation strategies including the integration of foods containing lycopene and other nutrients proposed to be implicated in delaying cancers – including PCa development. The articles lacked detail The study findings about women and PCSGs are available in more detail at: but pointed to specific foods as health- enhancing and cancer- preventing. Some articles indicated that men should take responsibility for their health; however, it was women Bottorff, J.L., Oliffe, J.L., Halpin, M., Phillips, M. McLean, G., & Mroz, L. who were most often portrayed as the lynchpin in surveying and informing men's health (2008). Women and prostate cancer support groups: The gender connect?
practices. An example of this included an article describing how Theresa Heinz-Kerry's Social Science and Medicine, 66, 1217–1227. medical knowledge – and knowledge of her husband's health – may have saved her Ms Kerry knew enough to have her husband's blood retested for C- reactive protein, a little-known indicator of potentially cancerous 5. Canadian newspapers' portrayals of PCa
inflammation. Two days before Christmas, his doctor told Mr. [John] Kerry his wife's fears were well placed; he was in the very Providing information to men and their families is the primary role of PCSGs. However, early stages of PCa.41 there is implicit and sometimes explicit concern that "lay" perspectives might be inaccurate or biased. In thinking about where else men and their partners might access Overall, our analyses indicated that PCa is depicted most often in commerce based PCa information we decided to systematically analyze how two national Canadian articles and stories about men's courage. In addition, there is little consistency in the PCa newspapers, The Globe and Mail and the National Post, portray PCa. Articles published screening and treatment information presented, nor are there directions or strategies between 2001 and 2006 that contained the term "prostate cancer" in the title or text were provided to guide men about how best to engage in self-health. collected and a total of 417 PCa articles were analyzed to reveal the following three Treatment imperative
The study findings about PCa and Canadian newspapers are available in more detail at: PCa screening and treatment technologies were detailed in 178 (42%) articles. Seventy- two articles mentioned the prostate specific antigen (PSA); however, uncertainty about Halpin, M., Phillips, M., & Oliffe, J.L. (In Press) Prostate cancer in
the efficacy of the PSA test was discussed in approximately half of the articles (n = 35). Canadian newspaper media: Representations of illness, disease and
In terms of PCa treatment modalities, articles focused on hormone treatments (n = 64), masculinities. Sociology of Health and Illness.
surgery (n = 29), radiation therapy (n = 29) and brachytherapy (n = 10). The vast majority of these articles appeared in the business section, and hormone treatments (as the most expensive PCa therapy heavily subsidized by the federal government) were often linked to pharmaceutical companies' stock market prices. When PCa treatment side effects, including erectile dysfunction (ED) were discussed, typically it was combined with the marketing of pharmaceutical remedies. For example, the unveiling of Viagra's™ competitor, Cialis™ detailed the testimonial of a 54-year-old man who had developed ED following PCa surgery. The advantages of Cialis'™ longer half-life were highlighted in the man's testimonial, "because it lasts for 36 hours, [sex] doesn't have to be a planned event, which is very attractive. It leads you back to a much more normal life".40 refreshments, or organizing social events. Although these women downplayed their contributions, they were vital to the social life. A 60-year-old woman, who had attended group meetings with her husband for ten years, explained her role: Implications for practice
I'm the refreshment lady…The tea, coffee, actually I used to make The findings detailed in this report enabled us to thoughtfully consider how to maximize everything at one time…they had a meeting, I wasn't there, the impact of PCSGs. As such, the following recommendations are offered as strategies [laughs] and they voted me to do it [laughter]…Because there's a to ensure the continuation and growth of PCSGs: lot of people that didn't want to do it, it doesn't have to be the woman, it could be the guys but they didn't want to do the coffee, • Although PCSGs will not appeal to all men, using the word "support" is ‘How much coffee do I put in, how much water do I put in?' you associated with indebtedness or weakness and may discourage men from know, and they'd really stress themselves out about it. attending. We recommend a name change to mutual help or men's health to
more accurately reflect the core business of education and information and
attract more men to group meetings. • The World Wide Web offers an important medium to extend and promote the
work of PCSGs. That said, the ultimate success of virtual PCSGs is contingent
upon having sufficient resources to design, deliver, and regularly evaluate and update information in ways that men can easily access and understand, and explain to others. • The permission of others at PCSGs to talk about health and illness afforded men Women also operated as background supporters, wanting to be there for their husbands
the freedom to actively engage in self-health. Therefore, men's health promoters without disrupting the men's ownership of the group because they believed this would need to tailor content and encourage and expect men to talk, rather than
inhibit men's support for each other. Positioning themselves in this way helped minimize disseminating generic information or telling men how to look after their health the women's anxiety about attending a men's group, and provided a way to encourage and respond to illness. men's self-disclosure. A 65-year-old woman who had been attending group meetings for one year explained that during group discussions and the associated question period, she • Humour played a central role in how men interacted at the groups and this might
remained quiet because her husband was the one who needed to talk: also be useful in the delivery of other men's health promotion programs.
Balancing PCa information with discussions about healthful practices
maintained the attendee's interest, but avoided overloading men with information. I don't get involved with the questioning because it's [husband] This was important because rather than an exclusive focus on PCa, many that has it, and he's the one that knows how he feels so if he has a opportunities existed for men to link health and illness and promote their health question he'll ask but I don't really say anything. for reasons other than heeding expert advice or seeking a PCa remedy. • The needs of female partners are underserved by professional health care
services and, as such, women's PCSGs might be an important additional resource Conversely, some women explicitly positioned the experience of PCa as a couple's to meet the needs of a greater number of women. illness and adopted the role of a cancer co-survivor. These women shared and solicited
psychosocial 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 Future Research
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: We recommend that the following research questions be addressed to extend and promote the work of PCSGs in Canada: • What are health care professionals' connections to, expectations of, and recommendations for PCSGs? relations across the entire illness trajectory.10,12-14,17 We focused our analysis to better • How can on-line PCSGs inform and influence PCa consumers and service understand how PCa was situated and negotiated as a ‘couple's illness', by describing women's participation at PCSGs. The reasons why women attended the groups and the roles they played at group meetings are detailed below. • How might professionally facilitated psychosocial PCa interventions be administered on-line and at face-to-face PCSGs? Reasons for attending
Despite feeling anxious and wondering whether they would fit in at a men's group • What community-based PCa supports will best meet the needs of women? 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: Oliffe, J.L., Halpin, M., Bottorff, J.L., Hislop, T.G., McKenzie, M., & Mroz, L. (2008). How prostate cancer support groups do and do not survive: A British Columbian I went to support my husband because he was newly diagnosed but perspective. American Journal of Men's Health, 2(2), 143–155. I also was quite overwhelmed by the amount of information there was….So I found that maybe the support group there would be an Oliffe, J.L., Gerbrandt, J., Bottorff, J.L., & Hislop, T.G. (In Press). Health promotion and opportunity to begin to make more sense of …the medical aspect of illness demotion at prostate cancer support groups. Health Promotion Practice. 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 Oliffe, J.L., Ogrodniczuk, J., Bottorff, J.L., Hislop, T.G., & Halpin, M. (In Press) husband but hopefully to discuss things with other women. Connecting humor, health and masculinities at prostate cancer support groups. Psycho- Oncology. Bottorff, J.L., Oliffe, J.L., Halpin, M., Phillips, M., McLean, G., & Mroz, L. (2008). Women and prostate cancer support groups: The gender connect? Social Science and Medicine, 66, 1217–1227. Halpin, M., Phillips, M., & Oliffe, J.L. (In Press) Prostate cancer in Canadian newspaper media: Representations of illness, disease and masculinities. Sociology of Health and Work in progress:
Continued attendance centered on the women's need to manage their experience of their partner's illness, as well as to give back to the group as a couple. A 75-year-old woman Oliffe, J.L., Bottorff, J.L., McKenzie., M., Hislop, T.G., Gerbrandt, J., & Oglov, V. who had been attending group meetings for 10 years explained: Prostate cancer support groups, health literacy and consumerism: Are community-based volunteers redefining older men's health? I only go with him….Every once in a while he would say, "I do not know why I am going anymore." I always come back with, "Well it Oliffe, J.L., Bottorff, J.L., Austin, D., Hislop, T.G., & McKenzie, M. Taking care of is for the other fellows that are there, the new people, because you business: Prostate cancer support group leaders. are a survivor." I think it is important for them to hear the survivors….I sometimes wonder why we go too, but it is for the Oliffe, J.L., Haines, R., Bottorff, J.L., & Phillips, M. Women's commentaries about prostate cancer survivors' health and illness practices. Oliffe, J.L., & Bottorff, J.L. Couples at Prostate cancer support groups: A gender Women's roles
relations analysis. 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 I was talking about using Viagra to see whether it will help, well it gave me a headache—maybe that's a good thing!? There was Oliffe, J.L. (May, 2009). Findings from our PCSG study. Presentation at the Victoria humour about that, that went into the room. It's kind of light- Prostate Cancer Support Group, Victoria, British Columbia, Canada. hearted and people are trying to make the best of it, of a bad joke. Oliffe, J.L. (March, 2009). Findings from our PCSG study. Presentation at the Surrey Prostate Cancer Support Group, Surrey, British Columbia, Canada. Although the humour was well-intended, many group leaders were aware of the need to Oliffe, J.L. (December, 2008). Your PCSG and Active Surveillance. Presentation to the strategize the use of humour to ensure the comfort of all attendees. A 65-year-old group Calgary PCSG. Calgary, Canada. leader of 10 years explained: Oliffe, J.L. (December, 2008). PSCGs – What next? Presentation to the PCSGs Alberta Board of Directors. Calgary, Canada. You've got to be very careful. The humour is clean, non- Oliffe, J.L. (October, 2008). Gendering prostate cancer in the context of support groups. judgmental and you've got to be very, very careful on how you Panel Keynote presented at the Spanish Ministry of Health, Women's Health Observatory deliver the humour…You've got to know your group and what Workshop, Madrid, Spain. people are in the group. The people that I was giving a bad time to, [they] enjoyed the bantering back and forth…They would egg me Oliffe, J.L. (August, 2008). The role of humour at PCSGs. Presentation at the Vancouver on and I would egg them on and it was fun and they loved it. Other Prostate Cancer Support Group, Vancouver, British Columbia, Canada. individuals, you can't do that. Oliffe, J.L. (June, 2008). Qualitative research methods for clinicians. Invited workshop at Vancouver Coastal Health, Vancouver, British Columbia, Canada. Our analyses revealed how humour can be integral to legitimizing men's support group Oliffe, J.L., Ogrodniczuk, J., Bottorff, J.L., Hislop, T. G., & Halpin, M. (May, 2008). involvement and engagement with self-health. A sense of humour can give a group Connecting humor, health and masculinities at prostate cancer support groups. Paper member a tool for expressing complicated emotional states, while the wit itself may buoy presented at the Canadian Association of Psychosocial Oncology, Halifax, Nova Scotia, self-esteem and silence self-criticism. In the PCSG settings, humour can regulate the emotional atmosphere by enlivening social interactions. Thus, the sharing of laughter is an indication of a degree of shared safety and establishes an intimacy in interpersonal Bottorff, J.L., Oliffe, J.L., Halpin, M., Mroz, L., McLean, G., & Phillips, M. (May, relations and facilitates communication by, for example, promoting cohesion among 2008). Women attending prostate cancer support groups: The gender connect? Paper group members. Additionally, humour itself can be therapeutic because of the way it presented at the Canadian Association of Psychosocial Oncology, Halifax, Nova Scotia, Oliffe, J.L. (October, 2007). International perspectives in men's health research. Panel Member, Australian National Men's Health Conference. Adelaide, South Australia. The study findings about the use of humour at PCSGs are available in more detail at: Oliffe, J.L. (October, 2007). Empirical, methodological and theoretical: The men's health trifector. Invited Workshop, Australian National Men's Health Conference. Adelaide, Oliffe, J.L., Ogrodniczuk, J., Bottorff, J.L., Hislop, T.G., & Halpin, M. (In South Australia. Press) Connecting humor, health and masculinities at prostate cancer
support groups. Psycho-Oncology.
Oliffe, J.L. (October, 2007). Prostate cancer support groups: Canadian group sustainability. Keynote presentation at Prostate Cancer Foundation of Australia, Public Lecture. Adelaide, South Australia. 4. Women and prostate cancer support groups
Oliffe, J.L. (September, 2007). Prostate cancer support groups – How are we doing? Keynote presentation at the Canadian Prostate Cancer Network (CPCN) and Canadian Women influence their spouses' experiences of PCa, and are also significantly affected Prostate Cancer Research Initiative (CPCRI) Conference. Toronto, Ontario, Canada. by living with a partner who has PCa. So much so, that PCa has emerged as a "couple's illness"37-39 in which the disease, as well as its treatments, affect gender identities and 3. The function of humour
Oliffe, J.L. (July, 2007). Sustainability and PCSGs. Presentation at the Victoria Prostate Cancer Support Group, Victoria, British Columbia, Canada. Psychosocial benefits, including improved mood and mental health, and increased quality of life, have been reported among men who routinely attend PCSG meetings.33-36 We Oliffe, J.L. (June, 2007). Qualitative research methods for clinicians. Invited workshop at noticed that humour was frequently a part of the groups' interactions, and this prompted Vancouver Coastal Health, June, Vancouver, British Columbia, Canada. us to formally examine the function of humour at PCSGs. The study findings revealed how humour could disarm men's stoicism and mark the boundaries for providing and Oliffe, J.L., Halpin, M., Bottorff, J.L., Mroz, L., Hislop, G., & McKenzie, M. (June, receiving mutual help. 2007). The sustainability of prostate cancer support groups: Are the grassroots burning? Paper presented at the 19th IUHPE World Conference on Health Promotion and Health Education. Vancouver, British Columbia, Canada. Disarming stoicism
By opening with a joke or inserting a humourous remark, regardless of whether it brought Oliffe, J.L., Bottorff, J.L., Halpin, M., Phillips, M., McLean, G., & Mroz, L. (June, shrieks of laughter or a few sniggers, the men were able to manufacture something that 2007). He said, she said: Women's commentary about men who attend prostate cancer others could actively engage with and react to. Humour often subtly disarmed stoicism in support groups (PCSGs). Paper presented at the 19th IUHPE World Conference on ways that did not necessarily demand talk from each and every man who attended the Health Promotion and Health Education. Vancouver, British Columbia, Canada. group. Instead, a shared joke or laughter constituted a group activity, and there was often a central character(s) in each who enjoyed sharing ‘their' humour as a remedy. A 74- Bottorff, J.L., Oliffe, J.L., Halpin, M., Mroz, L., McLean, G., & Phillips, M. (March, year-old man explained that understanding and empathy existed within the group and 2007). The benefits, roles and reasons for women attending prostate cancer support humour was used to signal that, and to reassure newcomers that their cancer and group- groups. Paper presented at the Canadian Conference on Men's Health, Victoria, British related anxiety would dissipate over time: Columbia, Canada. There are a couple of fellows there that didn't say a word all night. Halpin, M., Phillips, M., & Oliffe, J.L. (March, 2007). Prostate cancer in the Canadian I could tell by their posture that they have just been diagnosed and news media: A case of inconsistent messaging? Paper presented at the Canadian they were obviously terrified as I was when I was first diagnosed. Conference on Men's Health, Victoria, British Columbia, Canada. There's a lot of anxiety there and those fellows were not prepared to open up. Others were there who have been through this, sort of Oliffe, J.L. (March, 2007). Prostate cancer support groups in British Columbia. Keynote around the road on this thing. Some of them were quite humorous presentation at the Annual General Meeting and Banquet, British Columbia Foundation about this and that was a nice balance between these guys. for Prostate Disease. Vancouver, British Columbia, Canada. Oliffe, J.L. (October, 2006). Study outline – the role of PCSGs in health promotion. Presentation at the Surrey Prostate Cancer Support Group, Surrey, British Columbia, A shared joke or laughter constituted a group activity, and there was often Oliffe, J.L. (April, 2006). Preliminary findings – PCSG sustainability. Presentation at the a central character(s) in each who Vancouver Prostate Cancer Support Group, Vancouver, British Columbia, Canada. enjoyed sharing ‘their' humour as a Oliffe, J.L. (September, 2005). The role of PCSGs in health promotion – an overview and invitation to participate in a new study. Presentation at the first BC Foundation for Prostate Disease Workshop, Vancouver General Hospital, Vancouver, British Columbia, Marking the boundaries
Men also used humour to introduce potentially sensitive PCa issues such as urinary incontinence, sexual dysfunction, and death. A quip or joke was often put forward to gauge the group's interest, and to assess whether the discussion of ordinarily taboo topics was permissible. A long group discussion about treating erectile dysfunction (ED) took place after a 66-year-old participant who had been attending PCSG meetings for three years signalled his intact male libido but acknowledged the challenges of successfully Trajectory and problem-specific information
Information was solicited by and tailored to individuals to counter specific problems based on where they were within the illness trajectory. The most common example of tailored information related to treatment decision-making for newly diagnosed men who were deciding if and what treatment they would have. Group members were quick to Special thanks to the PCSGs for welcoming us to their meetings, endorsing this study, share their perspectives, but careful to be impartial about the treatment options. Some and assisting us in furthering our understanding of men's health and PCa. Sincere thanks larger PCSGs formed treatment sub-groups (i.e., prostatectomy, radiation therapy, to the men and women who participated in the individual interview portion of this study. brachytherapy, etc.) which newly diagnosed men could access to discuss specific In addition, we would like to thank the Canadian Prostate Cancer Network (CPCN at information. A 72-year-old participant who had recently undergone brachytherapy http://www.cpcn.org/) and Bob Shiell, Murray Gordon and Wally Seely for their explained that he was able to provide more information than otherwise would have been assistance. Thanks to the British Columbia Foundation for Prostate Disease (BCFPD at available to a man wanting to make a treatment decision: http://www.bcprostatecancer.org/) especially Ted Butterfield, Ian Baxter, Val Strijack, Dan Cohen, Len Gross, George Main, Don Stewart and Bren Witt for their ongoing support. The CPCN and BCFPD's inclusion of us and endorsement of the study at national and provincial meetings ensured the feasibility of completing the research. The It set his mind at ease because he was finally able to talk to CPCN published findings drawn from this study on their web site and in the Our Voice, somebody who has been through the brachytherapy process. Prior newsletter, thus greatly assisting our knowledge dissemination efforts. The expertise and to that, the information he had, had come from the urologist and hard work of the investigative team, research staff and administrators was also integral to his family doctor who have never gone through the whole process. achieving the deliverables derived from this research. Funding Agencies
This study was made possible by the generous support of the Canadian Institutes of Health Research (CIHR); Institute of Gender and Health; #11R91563). Additional career support for Dr. John Oliffe was provided by the CIHR Institute of Gender and Health (New Investigator award). Additional project funding and career support for Dr. John Oliffe was also made available by the Michael Smith Foundation for Health Research (MSFHR) Scholar award. Coalition Advisory Committee
A Coalition Advisory Committee was a vital component of this research. The committee members were: Mr. Len Gross, Ms. Diane Marshall, Ms. Cheri Van Patten and Mr. Bren Witt. These dedicated individuals provided key input regarding study findings and advised us on how best to disseminate findings to key stakeholders. As future projects are developed, we are seeking the committee's advice on how best to continue our work and apply the study findings to extend and promote the work of PCSGs. The study findings about health promotion and illness demotion are available in detail at: Research Staff
Oliffe, J.L., Gerbrandt, J., Bottorff, J.L., & Hislop, T.G. (In Press). Health
Sincere thanks to the project research staff who assisted on the project in various promotion and illness demotion at prostate cancer support groups. Health
capacities including: project management (Michael Halpin and Melanie Phillips), data Promotion Practice. collection (Lawrence Mroz, Graham McLean, Michael Halpin, Joanne Carey and Mary Kelly) and data synthesis and manuscript preparation (Julieta Gerbrandt, Michael Halpin, Melanie Phillips, Graham McLean, Lawrence Mroz, Tina Thornton, Valerie Oglov, Kristy Hoyak and Anna Chan). Living examples of healthy men
Administrative Staff
Participants drew reassurances from survivors who attended the An environment conducive to meetings. Many men explained how they observed the practices men's talk was established to and progress of other men as a means to engage with and, in normalize PCa, and to promote some cases, assess their own health. This was due, in part, to the The administrative assistance afforded by the the individual and collective complexities and ambiguities associated with the science of UBC School of Nursing, the Centre for Nursing health of group members. PCa. As such, the presence of healthy men at the groups and Health Behaviour Research (NAHBR) and provided important "proof" and "hope" that survival was NEXUS were instrumental in completing this possible, regardless of the specificities of men's PCa research. Special thanks to Merrilee Hughes, biomarkers. For example, an 81-year-old participant connected Joanna Ho, Mary Sun, Joyce Wu, Gladys with another man at the monthly PCSG meetings who had the Tecson, Meghan Mathieson and Christina Han same treatment and similar PCa biomarkers. When the man for ALL their help. missed a few meetings the participant telephoned him at home to make sure he was doing well: Investigative Team
John Oliffe, RN, MEd, PhD. Lead Investigator and
Associate Professor, School of Nursing, University of I phoned him and talked to his wife. And I said ‘Is [support group British Columbia. Email john.oliffe@nursing.ubc.ca member] sick? ‘ And she said, ‘No he's cross-country skiing'…and I said, ‘Well, if he can do it, I can do it too'…This is extremely important to me that you find a guy that has a Gleason of 9, that's Joan Bottorff, RN, PhD, FCAHS. Co-investigator,
gone through the same treatment I'm going through now a couple Professor of Nursing, and Chair in Health Promotion and years later because his was 3 years ago. He's doing really good. Cancer Prevention at the University of British Columbia, He's cross-country skiing. T. Gregory Hislop, MSc, MD, CM. Co-investigator and
Mixing health and illness information
research consultant. His research focuses on cancer The ability of PCSGs to mix PCa and health information afforded the "light and shade" epidemiology, diet and on the development and to maintain the men's interest without overwhelming them. Rather than an exclusive evaluation of cancer screening programs. focus on PCa, opportunities were available for the men to promote their health and well- being rather than to remedy or ruminate on an existing PCa. Many men detailed specific dietary supplements or strategies for modifying the consumption of potentially beneficial (i.e., fruits/vegetables) and detrimental (i.e., sugar, alcohol, coffee) foods. Michael McKenzie, MD, FRCPC. Co-investigator,
Complementary and alternative medicines were also discussed as a means to maintaining radiation oncologist and member of The Genitourinary and improving health. A 74-year-old man who had been attending group meetings for Tumour Site Group at the British Columbia Cancer less than 12 months talked about the impact of group conversations, specifically citing meditation as key to reducing his PCa induced anxiety: A lot of the apprehension, the trauma that is associated with first hearing about cancer, a couple of fellows there talked about meditation and I was never big on that, but I do that now. Appendix 1 - British Columbian Prostate Cancer Support Groups
Collaboration or emancipation
PCSG sustainability was also influenced by linkages with professional organizations. ProCan Support Web site & Publication
One option for the PCSGs in this study was to affiliate with cancer fundraising (A Virtual BC Prostate Cancer Support Group) agencies. However, concerns were expressed by some PCSG attendees that the Contact: George Main 604-574-5554 Email: gcmain@bcprostatecancer.org groups would end up working for organizations that dictated the terms and conditions Where: www.procansupport.com under which they operated. Many PCSGs were resistant to anything resembling a "takeover" or "branding" by organizations that did not have the capacity to provide Abbotsford PSA (Prostate Cancer Support & Awareness) Group
resources to the groups and willingness to negotiate mutually acceptable terms of Contact: Val Strijack 604-856-5863 or Bill Lantz 604-858-1826 Email: Val_strijack@telus.net or billevelyn@shaw.ca When: The 3rd Thursday of each month (no meetings July/August and December) Time: 7:30 to 9:30 p.m. Where: Peace Lutheran Church, at Ware and Marshall Rd. Abbotsford, B.C. Ashcroft "Men's Health Matters" Group
Contact: David Durksen 250-453-9864 – cell 250-457-3226 Email: ddurksen@coppervalley.bc.ca When: The 2nd Tuesday of each month Where: Ashcroft Health Centre (Hospital) Burnaby/New Westminster Prostate Cancer Support & Awareness Group
(East Vancouver, Burnaby, New Westminster) Contact: Ian Baxter 604-421-8813 Email: ibbaxter@telus.net When: The 1st Saturday of each month Time: 10:00 to 12:00 Noon The study findings about PCSG sustainability are available in more detail at: Where: 2nd floor Education Room ‘A'. Burnaby General Hospital - 3935 Kincaid Ave. Oliffe, J.L., Halpin, M., Bottorff, J.L., Hislop, T.G., McKenzie, M. & Mroz, L. (2008). How prostate cancer support groups do and do not survive: A
Campbell River/West Coast Prostate Awareness Group
British Columbian perspective. American Journal of Men's Health, 2(2),
Contact: Frank Greens 250-923-1357 or 250-286-9696, Merv Rotzien 250-926-0076 or Al Hodgkinson 250-923-1357 Email: hudsey@telus.net (Merv) When: The 3rd Tuesday of each month Time: 7:00 p.m. – 9:30 p.m. Where: Altrusa House, # 12 142 Larwood Road, Campbell River 2. Health promotion and illness demotion
Comox Valley Prostate Cancer Support & Awareness Group
Contact: Brian Lunn 250-338-8235 There is strong evidence that men are reluctant to engage with health promotion Email: kenya-cottage@shaw.ca or prostatecancer@shaw.ca programs; typically men react to severe symptoms rather than attempt to maintain their Web site is www.members.shaw.ca/prostatecancer/ health, and are more likely to deny than discuss illness-related issues.32 Men at PCSGs When: The 2nd Monday of each month (except July & August) October this year is the revealed an intriguing exception to these longstanding commentaries by routinely 20th, the 3rd Monday, to avoid Thanksgiving Day Time: 7:30 to 9:00 p.m. discussing ordinarily private illness experiences and engaging with self-health. We Where: Community Health Centre, 961a England Ave., Courtenay, B. C. observed how an environment conducive to men's talk was established to normalize PCa, and to promote individuals and the collective health of group members. Group members Coquitlam Prostate Cancer Support & Awareness Group
often focused on the facts (e.g., the latest biomedical research) and figures (e.g., Prostate Contact: Norm Sherling 604-936-8703 Specific Antigen [PSA] and Gleason biopsy scores) and this enabled many men to Email: nsherling@shaw.ca When: The 1st Tuesday of each month objectify and position their PCa as a manageable disease. At the same time, through Time: 7:00 to 9:00 p.m. group discussions, the men shared their health promotion practices. Three PCSG Where: Pinetree Community Centre, 1260 Pinetree Way. Coquitlam, B.C. strategies are outlined to detail the specificities of how PCSGs achieved this activity. Cowichan Valley Prostate Cancer Support & Awareness Group
Contact: Gordon Thomas 250-743-6960 The key study findings related to (1) group sustainability, (2) health promotion strategies, Email: gandmthomas@shaw.ca When: The last Thursday of each month (3) the use of humour and (4) the roles of women in PCSGs. We also assessed the PCa Time: 7:00 to 9:00 p.m. information shared by Canadian newspapers to better understand how that medium Where: Lecture Room, Cowichan Dist. Hospital, Duncan messages the public about PCa. East Kootenay Pc Support Group
Contact: Peter Wightman 250-427-4822 or Kevin Higgins 250-427-3322 1. Prostate cancer support group sustainability
Email: rosehawk@shaw.ca OR kevbevhiggins@cyberlink.bc.ca When: The 3rd Wednesday of each month Early on in the study we noted that the groups often struggled and some groups had Time: 7:00 to 8:30 p.m. Where: College of the Rockies, Cranbrook Campus stopped meeting; while others were enduring, meeting regularly, and attracting large numbers of attendees. While collecting data from the 16 groups in this study, we became Kamloops Prostate Cancer Support & Awareness Group
aware of 9 BC-based PCSGs that had recently disbanded, and many of the groups that we Contact: Larry Reynolds 250-376-4011 attended were challenged to attract and retain members, maintain cohesive leadership, Email: larube_kam@shaw.ca and provide up-to-date information in a rapidly changing field. Group sustainability was When: Once a month (Please call 250-374-9188 for more info.) formally investigated to better understand these issues. Where: Interior Health meeting room at 450 Lansdowne St Kelowna Prostate Cancer Support & Awareness Group
While collecting data from Contact: Bren Witt 250-764-1031 Email: sbren@bcprostatecancer.org the 16 groups for this study, When: The 2nd Saturday of each month we became aware of 9 BC- Time: 9:00 a.m. to 11:00 noon Where: Kelowna Health Centre, 1340 Ellis Street. based PCSGs that had recently disbanded, and many of the groups that we Nanaimo Prostate Cancer Support Group
Contact: Malcolm W. Reville 250-756-3116 attended were challenged Email: mmmjo@shaw.ca to attract and retain When: The 2nd Tuesday of each month Where: Nanaimo Cancer Society Leadership and management
North Shore Prostate Cancer Support & Awareness Group
As others have observed in professionally-led cancer support groups,30 the success and Contact: Tom Sayle 604-929-3125 Email: teeandjay@shaw.ca longevity of PCSGs is reliant on effective leadership and management. PCSG leadership When: The 4th Tuesday of each month January to November (November – social night) no can be challenging for lay volunteers. The groups attract men and women with a wide meeting in December diversity of needs that fluctuate considerably from one meeting to the next. Cohesive Time: 7:00 to 9:00 p.m. leadership, shared management, and specific group facilitation strategies were integral to Where: Lions Gate Hospital, Basement Auditorium meeting the needs of attendees and fostering their camaraderie and commitment to the Parksville (DISTRICT 69) Prostate Cancer Support & Awareness Group
group. Group members were adamant that PCSGs needed to be survivor-led, yet being a Contact: Doug Bamford 250-954-0887 group leader required significant time, energy, and commitment that only a few men were Email: dbamford@shaw.ca able or willing to provide. Similar to problems described by both professional and When: The 1st Wednesday of each month nonprofessional leaders of cancer support groups,31 PCSGs' dependence on one or two leaders and lack of defined terms and tenure, meant that group leaders were at risk for Where: 361 Willow Street, Parksville, B.C. burnout. In these situations, the long-term viability of the group was uncertain. Finding Pender Island Prostate Cancer Support & Awareness Group
ways to support the leadership of PCSGs and the development of succession planning Contact: Jim Dunn 250-629-3273 was critical to ensuring group sustainability. Email: jsdunn@shaw.ca When: No Longer meets but Jim is willing to take calls. Prince Rupert Prostate Cancer Support & Awareness Group
Contact: Judy Rea 250-622-6533 When: The 1st Wednesday of each month 9/16 – one leader Where: Health Unit Qualicum Beach Prostate Cancer Support & Awareness Group
Contact: Jack Rossiter 250-951-2083 When: The 1st Tuesday of each month Time: 7:00 to 9:00 p.m. Where: St Stephen Church ears lish
Quesnel Prostate Cancer Support & Awareness Group
Contact: Ron Campbell 250-992-2726 Email: ronbetcampbell@shaw.ca When: meet on an as needs basis Where: 332 Front St., Quesnel Revelstoke Prostate Cancer Support Group
Contact: Darrell Goodman 250-837-3663 Email: mercury54@telus.net When: under development (some fellows meet casually at a coffee shop) unicipal ealth C ospital Time: Being arranged – call Darrell Salts Spring Island Prostate Cancer Support & Awareness Group
Contact: Chris Rieder 250-537-2720 orm haring
Email: bigcedar@shaw.ca When: The 3rd Tuesday of each month Time: 1:30 to 3:30 p.m. Where: Farmers' Institute Sunshine Coast Pc Support Awareness Group
Contact: John Keates, Chair 604-885-4181 roup characteristics
Email: kkeates@dccnet.com When: The 1st Tuesday M urationD (M
Where: St. John's United Church, Davis Bay, Sechelt ancer Society
Surrey Prostate Cancer Support & Awareness Group
Contact: Leno Zecchel 604-596-2640 or George Main 604-574-5554 Email: lzecchel@uniserve.com or gcmain@bcprostatecancer.org When: The last Saturday of each month (not December) anadian C
Time: 10:00 am to 12:00 noon Where: Cafeteria, Surrey Memorial Hospital 13750 96 Ave. Surrey, BC Vancouver PSA (Prostate Cancer Support & Awareness) Group
Contact:Len Gross 604- 434-2100 or Gordon Dunn 604-739-5900 Email: lengross@shaw.ca or gordond2@smartt.com ffice provided by C
When: The 1st Thursday of each month Table 1. Prostate Cancer Support G
Time: 11:00 a.m. to 1:00 p.m. 428 (100% 4 – 100 26.8 25.0 Where: Canadian Cancer Society Board Room. 565 West 10th Ave. Vancouver. of meaning and purpose through attending support group meetings.25 A survey of men Vernon PSA (Prostate Cancer Support & Awareness) Group
attending a professionally-led Montreal-based PCSG indicated that the sharing of PCa Contact: Ed Eyford 250-545-6220 or Lloyd Mitchell 250-549-2362 experiences with others gave men reassurance, helped alleviate anxiety, and provided a Email: eaeyford@telus.net or lloyd-marion@shaw.ca more positive outlook and a perception of being actively involved in their treatment.26 When: The 4th Monday of Jan., Feb., Mar., Apr., May, Sept., Oct., & Nov. Time: 7:30 to 9:30 p.m. Both studies recommended further research to more fully understand how PCSGs operate Where: The People Place 104–3402 27th Avenue in Canada, and in 2005 we were able to build upon these earlier studies. Victoria PSA (Prostate Cancer Support Association)
Contact: David Durksen or Andrew Godon 250-382-6531 Email: ddurksen@coppervalley.bc.ca or andrew.godon@gmail.com When: The 2nd Tuesday of each month Time: 7:00 to 9:00 p.m. Study design
Where: Begbie Hall Royal Jubilee Hospital grounds, 2101 Richmond Ave. Victoria A qualitative ethnographic design, including fieldwork, participant observations, and individual interviews provided an effective way to establish understandings about White Rock/South Surrey Prostate Cancer Support & Awareness Group
PCSGs.27 The primary characteristic of the study was its commitment to cultural Contact: John Morton 604-538-0011 interpretations of the practices and social norms at the PCSGs.28-29 Email: johnmorton@shaw.ca When: No Longer meeting but John is willing to take calls. We attended and observed meetings at 16 groups in diverse rural and urban locations in BC, Canada. The PCSG meeting details based on fieldwork and participant observations are included in Table 1. 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 PCa survivor volunteers and the number of attendees ranged from 4 to 100 people (M = 27). Potential interviewees volunteered from each PCSG and from that pool we interviewed 54 men with varying group associations. Specifically, 22 men held leadership roles (e.g., leader, facilitator, secretary), 16 were long-term members (attending for more than 12 months) and 16 were short-term members (attending for less than 12 months); all completed individual semi- structured interviews. In total, the 54 interviewees accounted for approximately 16% of all the men observed at the group meetings, and they ranged in age from 53 to 87 years (M = 71.27 years; SD = 8.52 years) and had attended PCSGs for an average of 5 years (SD = 4 years)†. The majority of the men were married (n = 51) and retired (n = 44). The interviewee's mean time since PCa diagnosis was 6 years (SD = 5 years)†. Three men had not been treated; of the 51 men who had been treated, 15 had a prostatectomy, 6 received androgen deprivation therapy, 4 brachytherapy, 4 radiation therapy, and 22 a combination thereof. We also expected to recruit one woman from each PCSG to participate in the interview component of the study. However, many women were eager to talk with us, and we interviewed 20 women from 11 of the 16 groups. On average, 5.6 (21%) of the attendees at each of the PCSG meetings that we observed were women. Women interviewees self-identified as Anglo-Canadian (n = 14) and Northern European (n = 6), ranged in age from 54 to 84 years (M = 68.5 years), and most were retired (n = 15). Most participants (n = 16) attended with their husbands and, at the time of the interview, had attended group meetings from 6 months to 13 years (M = 6.5 years). The women's demographic data reflected what was typically observed at the group meetings. † Length of time attending the group varied widely, ranging from 1 month to 13 years as did time since diagnosis (1 month to 19 years). References
1. Hsing AW, Tsao L, Devesa SS. International trends and patterns of prostate cancer In Canada, no cancer is more common to men than prostate cancer (PCa).1 In 2007, incidence and mortality. Int J Cancer. 2000;85 (1):60–7. 22,300 Canadian men were diagnosed with PCa, and an additional 4,300 died of the 2. Canadian Cancer Society. Canadian cancer statistics; Prostate cancer stats [database on disease.2 Old age is the strongest predictor of PCa development3,4 and it is estimated that the Internet]. 2008 [updated 2008 April 9; cited 2008 August 11]. Available from: the proportion of elderly Canadians (>65 years of age) will increase from 13.2% (4.2 million) of the total population (2005) to 24.5% (9.8 million) by 2036.5 Men are also 3. Albertson P. Prostate disease in older men: Cancer. Hosp Pract. 1997;32(10): 159–66, living longer with PCa, and the death rate continues to be significantly lower than the incidence rate.6 In the absence of a known cause or cure, the number of men diagnosed 4. Kozlowski J, Grayhack J. Carcinoma of the prostate. In: Gillenwater J, Grayhack J, with PCa will increase with the aging population, and for many men it will become a Howards S, Mitchell M, editors. Adult and Pediatric Urology. Vol. 2, 4th ed. Philadelphia: Lippincott Williams and Williams; 2002. p. 1471–1654. chronic, long-term illness.6,7 Diverse health issues are encountered by men and their 5. Statistics Canada (2006). families as a result of PCa and its treatments, many of which influence gender roles and 6. Ellison LF, Stokes J, Gibbons L, Lindsay J, Levy I, Morrison H. Monograph Series on gender relations,8-17 and quality of life.18-20 The roles of breadwinner, husband and father Aging-related Diseases: X. Prostate Cancer. Chronic Diseases in Canada [monograph on are often altered, and pursuits of work and leisure can be undermined.8-9,15-17 the Internet] 2000 [cited 2004 March 5]; 19(1). Available from: http://www.phac- Furthermore, most PCa treatments affect potency and urinary continence, which directly 7. Remzi M, Waldert M, Djavan B. Prostate cancer in the ageing male. J Mens Health affect men's sexuality and intimate relationships.12-13, 14-17, 21-24 Gend. 2004;1(1):47–54. 8. Oliffe JL. In search of a social model of prostate cancer: Finding out about Bronch. In: Health and illness information are integral to the well-being of men who have PCa, and Pearce S, Muller V, editors. Manning the next millennium: Studies in masculinities prostate cancer support groups (PCSGs) have emerged as important community-based Western Australia: Black Swan Press; 2002. p. 69–84. resources. Underpinned by the basic premise that PCSGs have much to offer, we 9. Oliffe JL. Prostate Cancer: Anglo-Australian heterosexual perspectives [dissertation]. designed a study to better understand how groups operate as a means of describing their Geelong (Victoria, Australia): Deakin University; 2003. 10. Oliffe J. Anglo-Australian Masculinities and Trans Rectal Ultrasound Prostate Biopsy role in health promotion. The three-year study was funded by the Canadian Institutes of (TRUS-Bx): Connections and Collisions. Int J Mens Health. 2004;3: 43–60. Health Research (CIHR), Institute of Gender and Health and through their generous 11. Oliffe JL. Trans rectal ultrasound prostate biopsy (TRUS-Bx): Patient perspectives. Urol support we were able to explore: Nurs. 2004;5(4): 395–400. 12. Oliffe JL. Constructions of masculinity following prostatectomy-induced impotence. Soc • the feasibility of survivor-volunteer led PCSGs, Sci Med. 2005; 60(10): 2249–59. 13. Oliffe J. Embodied Masculinity and Androgen Deprivation Therapy. Sociol Health Illn. men's and women's patterns of engagement with, and perspectives about PCSGs, and 14. Chapple A, Ziebland S. Prostate cancer: Embodied experience and perceptions of masculinity. Sociol Health Illn. 2002; 24(6): 820–41. • factors shaping men's health promotion practices at PCSGs. 15. Fergus K, Gray R, Fitch M. Sexual dysfunction and the preservation of manhood: experiences of men with prostate cancer. J Health Psychol. 2002; 7(3): 303–16. The purpose of this report is to summarize the findings drawn from the study and make 16. Gray R, Fitch M, Fergus K, Mykhalovskiy E, Church K. Hegemonic masculinity and the practice and research recommendations. The content shared in this report has been experience of prostate cancer: A narrative approach. Journal of Aging and Identity. 2002;7(1): 43–62. published in academic journals, the ‘Our Voice' PCa survivor magazine and on the 17. Fergus K, Gray R, Fitch M. Active consideration: Conceptualizing patient-provided Canadian Prostate Cancer Network (CPCN) web site (http://www.cpcn.org/) and support for spouse caregivers in the context of prostate cancer. Qual Health Res. 2002;12: presented at conferences, workshops and PCSG meetings in Canada, the USA, Australia 18. Kirschner-Hermanns R, Jakse G. Quality of life following radical prostatectomy. Crit Rev Oncol Hematol. 2002;43: 141-151. 19. Meuleman EJH, Mulders PFA. Erectile function after radical prostatectomy: A review. Prostate Cancer Support Groups in British Columbia
Eur Urol. 2003;43: 95-102. 20. Palmer MH, Fogarty LA, Somerfield MR, Powel LL. Incontinence after prostatectomy: PCSGs are relatively recent phenomena, and the Vancouver group in British Columbia Coping with incontinence after prostate cancer surgery. Oncol Nurs Forum. 2003;30(2): (BC), established June 1992, was among the first groups to operate in Canada. Previous 21. Charmaz K. Identity, dilemmas of chronically ill men. In: Sabo D, Gordon DF, editors. studies of Canadian PCSGs, including an interview study of 12 men mostly in leadership Men's health and illness: Gender, power and the body. Thousand Oaks, CA: Sage roles in Winnipeg, Toronto and Ottawa-based groups, indicated that men derive a sense Publications; 1995. p. 266–91. 22. Navon L, Morag A. Advanced prostate cancer patients' ways of coping with the hormonal therapy's effect on body, sexuality, and spousal ties, Qual Health Res. * Please refer to Publications and Presentations (page 18 through 20) for specific details. 2003;13(10):1378–92. 23. Navon L, Morag A. Advanced prostate cancer patients' relationships with their spouses following hormonal therapy. Eur J Oncol Nurs. Jun 2003;7(2):72–81. 24. Navon L, Morag A. Liminality as biographical disruption: unclassifiability following hormonal therapy for advanced prostate cancer, Soc Sci Med .2004;58: 2337–47. 25. Gray RE, Fitch M, Davis C, Phillips C. Interviews with men with prostate cancer about their self help group experience. J Palliat Care. 1997;13(1):15–21. 26. Gregoire I, Kalogeropoulos D, Corcos J. The effectiveness of a professionally led support group for men with prostate cancer. Urol Nurs. 1997;17(2):58–66. 27. Lieberman MA, Golant M. Leader behaviours as perceived by cancer patients in professionally directed support groups and outcomes. Group Dyn. 2002. 6(4):267–76. 28. Wolcott HF. Writing up qualitative research. Newbury Park: Sage; 1990. 29. Boyle J. Styles of ethnography. In: Morse J, editor. Critical issues in qualitative research methods. Thousand Oaks, CA: Sage; 1994. p. 159–85. 30. Muecke MA. On the evaluation of ethnographies. In: Morse J, editor. Critical issues in qualitative research methods. Thousand Oaks, CA: Sage; 1994. p. 187–209. 31. Kirsten L, Butow P, Price M, Hobbs K, Sunquist K. Who helps the leaders? Difficulties experienced by cancer support group leaders. Support Care Cancer. 2006;14(7): 770–8. 32. Lee C, Owens R. The psychology of men's health series. Philadelphia: Open University 33. Manne SL. Prostate cancer support and advocacy groups: their role for patients and family members. Semin Urol Oncol 2002;20:45–54. 34. Steginga SK, Occhipinti S, Dunn J, Gardiner RA, Heathcote P, Yaxley J. The supportive care needs of men with prostate cancer. Psycho-Oncology 2001;10:66–75. 35. Katz D, Koppie TM, Wu D et al. Socio-demographic characteristics and health related quality of life in men attending prostate cancer support groups. J Urol 2002;168:2092–6. 36. Cordova MJ, Giese-Davis J, Golant M et al. Mood disturbance in community cancer support groups. The role of emotional suppression and fighting spirit. J Psychosom Res 2003;55:461–7. 37. Arrington MR, Grant CH, Vanderford ML. Man to man and side by side, they cope with prostate cancer: Self-help and social support. J Psychosoc Oncol. 2005;23(4): 81–102. 38. Boehmer U, Clark, JA. Married couples' perspectives on prostate cancer diagnosis and treatment decision-making. Psycho-Oncology. 2001;10(2): 147–55. 39. Soloway CT, Soloway MS, Kim SS, Kava BR. Sexual, psychological and dyadic qualities of the prostate cancer ‘couple'. BJU Int. 2005; 95(6): 780–5. 40. Taylor P. Dubbed ‘le weekender,' new drug to rival Viagra. The Globe and Mail; 2003, September 19: A.2. 41. Halbfinger DM. The Teresa factor. National Post; 2004, Feb 23: A.11.

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Microsoft word - hopkinsrrpcoursepatientsfamaliesperspective_post.docx

Highlights of the RRP meeting/CME course at Johns Hopkins, 30 May 2014: RRP patients/family members' perspectives [The following report is based on coordinated input from all those RRP families who attended the meeting] On Friday May 30, 2014, a CME course, "Updates in Recurrent Respiratory Papilloma: Clinical and Research Perspective", was held at Johns Hopkins in Baltimore, MD.

Microsoft word - 9 galley.doc

J. ENTOMOL. SOC. BRIT. COLUMBIA 100, DECEMBER 2003 Testing an attracticide hollow fibre formulation for control of Codling Moth, Cydia pomonella ALAN L. KNIGHT YAKIMA AGRICULTURAL RESEARCH LABORATORY, AGRICULTURAL RESEARCH SERVICE, USDA. 5230 KONNOWAC PASS RD., WAPATO, WA 98951 Laboratory and field tests were conducted to evaluate the use of an experimentalsprayable formulation of chopped hollow fibres loaded with codlemone and mixed with1.0% esfenvalerate and an adhesive to control codling moth, Cydia pomonella (L.)(Lepidoptera: Tortricidae). Moths were not repelled by the addition of the insecticide tothe adhesive and were rapidly killed following brief contact. A significantly greaterproportion of male moths flew upwind and contacted individual fibres for a longerperiod of time when fibres had been aged > 7 d versus fibres 0 – 7 days-old in flighttunnel tests. Field tests using sentinel fibres placed in 10.0 mg drops of adhesive onplastic disks stapled to the tree found that fibres were not touched until they had aged >8 d. Conversely, moth mortality following a 3-s exposure to field-collected fibresdeposited on the top of leaves was low in bioassays with fibres aged > 8 d. Thedeposition and adhesion of fibres within the apple canopy appear to be two majorfactors influencing the success of this approach. Fibres were found adhering to foliage,fruit, and bark within the orchard; however, visual recovery of fibres following each ofthe three applications was < 5.0%. Both the substrate and the positioning of the fibre onthe substrate influenced fibre retention. The highest proportion of fibres was foundinitially on the upper surface of leaves and this position also had the highest level offibre retention. Fibres on the underside of leaves or partially hanging off of a substratewere dislodged within two weeks.