Repackaging Prostate Cancer Support Group Research Findings

Introduction

Challenges abound for making psychosocial oncology research findings accessible to a diverse range of knowledge end-users. While consensus prevails that knowledge, perhaps especially that made possible by donor and tax payer funding, should be freely available, there are many factors to thoughtfully consider about how to best package and disseminate study findings. For example, notwithstanding the fact that many academic journals are restricted to paid subscribers, editorial demands for formal language and styles in these publications may not appeal to all potential knowledge end-users. In the specific context of research examining prostate cancer support groups (PCSGs), making study findings available to a range of audiences, including health care providers and potential support group attendees can also increase impact by promoting awareness of, and attendance at, PCSGs. Yet to achieve the somewhat lofty goal of engaging diverse knowledge end-users, considerations about content, style, and mechanisms for dissemination are key, as are the evaluations of those knowledge translation (KT) efforts. In this case study article, lessons learned from developing and evaluating The Prostate Cancer Help Yourself website (www.prostatecancerhelpyourself.ubc.ca) are made available to guide the KT efforts of other psychosocial oncology researchers and clinicians.

Prostate Cancer Support Groups (PCSGs)

In Canada, and many other Western countries, prostate cancer is the most common male cancer (Canadian Cancer Society, 2013; National Cancer Institute, 2013). Affecting 1 in 7 men, older age is the strongest predictor of prostate cancer development, and worldwide increases in male life expectancy will also likely increase the numbers of men diagnosed (Sun et al., 2009). In addition, men are living longer with prostate cancer, and the death rate continues to be significantly lower than the incidence rate (Canadian Cancer Society, 2013; National Cancer Institute, 2013). In the absence of a known modifiable cause, the number of men diagnosed with prostate cancer will increase with the aging population, and for many men it will become a chronic, long-term illness (Canadian Cancer Society, 2011, 2013; Jemal et al., 2009). Diverse health issues can accompany prostate cancer and its treatments - many of which influence gender roles, identities, and relations (Ervik & Asplund, 2012; Gannon, Guerro-Blanco, Patel, & Abel, 2010; Oliffe, 2006; Wall, Kristjanson, Fisher, Boldy, & Kendall, 2012; Zaider, Manne, Nelson, Mulhall, & Kissane, 2012). Often altered are breadwinner, husband/partner, and father roles, along with restrictions to work and recreational activities (Grunfeld, Drudge-Coates, Rixon, Eaton, & Cooper, 2013). Prostate cancer treatments can also diminish potency and urinary continence, which affect men’s sexuality and intimate relationships (Badr & Taylor, 2009; Bottorff et al., 2008; Broom, 2010; Gannon et al., 2010; Manne, Badr, Zaider, Nelson, & Kissane, 2010; Song et al., 2012; Zaider et al., 2012). Psychosocial supports and health and illness information are integral to the well-being of men who have prostate cancer, and as a result PCSGs have emerged as important community-based resources in Canada and other Western countries (Arrington, 2010; Oliffe, Ogrodniczuk, Bottorff, Hislop, & Halpin, 2009; Trapp, Woods, Grove, & Stern, 2013; Voerman et al., 2007; Zanchetta, Perreault, Kaszap, & Viens, 2007; Zhang, Galanek, Strauss, & Siminoff, 2008).

The vast majority of PCSG research has focused on the benefits and barriers to attending group meetings and primarily aimed at academic audiences. Previous work detailing benefits includes an interview study suggesting men gained self-help strategies from peers and prostate cancer experts through attending PCSGs (Zhang et al., 2008). Similarly, a survey of men who attended a professionally led PCSG identified how the sharing of prostate cancer experiences gave men reassurance, helped alleviate anxiety, and provided a positive outlook and perception of being involved in their treatment (Gregoire, Kalogeropoulos, & Corcos, 1997). The benefits described in these studies are confirmed elsewhere, and PCSGs have been reported as effectual in mitigating the psychosocial aspects of cancer by conveying information, empowering men with prostate cancer, enhancing and facilitating psychosocial adjustment, and helping men and their partners cope with life after a diagnosis and treatment of cancer (Arrington, 2010; Boonzaier et al., 2009; Sharpley, Bitsika, & Christie, 2009; Weber, Roberts, & McDougall, 2000). A PCSG review article by Thaxton, Emshoff, and Guessous (2005) concluded that men who attended PCSGs most valued information and education (e.g., related to treatment, side effects, latest research) as well as advocacy activities.

In terms of barriers to attending PCSGs, an interview study with 34 men and their partners led Gray, Fitch, Phillips, Labrecque, and Fergus (2000) to suggest PCSGs were poorly attended because men typically avoid disclosure due to low perceived need for support, fear of stigmatization, the need to minimize the threat of illness to aid coping, practical necessities in the work place, and the desire to avoid burdening others. Similarly, men’s misperceptions that PCSG meetings were geared toward emotional support of the terminally ill (Krizek, Roberts, Ragan, Ferrara, & Lord, 1999) and a sense of shame and embarrassment about sharing personal information (Grunfeld et al., 2013; Smith, Crane, Byers, & Nelson-Marten, 2002; Weber et al., 2000) were identified as barriers to attending support groups. While men’s misperceptions about PCSGs, along with individual preferences for privacy, pose barriers to attendance, there is evidence that health care providers strongly influence men’s interest in attending a “support” group. Steginga, Pinnock, Gardner, Gardiner, and Dunn’s (2005) survey questionnaire study of 1,224 attendees at Australian-based PCSGs confirmed that the clinician’s level of endorsement for men’s participation in PCSGs strongly influenced men’s uptake of group support. Health care providers’ lack of awareness of PCSGs can also be a significant barrier (Smith et al., 2002) and this was confirmed in subsequent study of 36 clinicians (27 urologists and 9 radiation oncologists) by Steginga et al. (2007) who found that participants were reluctant to refer patients to PCSGs, fearing that biased viewpoints and misinformation within the groups might contribute to men’s uncertainty and decisional regret.

Building on this evidence, our research foci explored the role of PCSGs in men’s health promotion by conducting fieldwork at the meetings of 16 face-to-face British Columbian based PCSGs and individual interviews with attendees (54 men and 20 women partners). Based on these data the key findings related to (a) PCSG strategies for health promotion (Oliffe et al., 2008; Oliffe et al., 2011; Oliffe, Gerbrandt, Bottorff, & Hislop, 2010), (b) the roles and functions of women partners and gender relations among couples attending PCSGs (Bottorff et al., 2008), and (c) group sustainability issues (Oliffe et al., 2009). Through this research detailed was how, in the context of PCSGs, men’s health promotion could be achieved in masculine ways. For example, the PCSG meetings were business like in their structure with itemized agendas that followed familiar schedules and strict timelines, and the language used and information shared most often reflected biomedical evidence-based concepts. Strength-based men’s health promotion approaches used in these groups worked to advance the well-being of men and their families. Findings included how PCSGs fostered men’s talk about ordinarily private health and illness matters by mixing health and prostate cancer information, tailoring prostate cancer trajectory and problem-specific information, and offering “living examples” of healthy men who experienced prostate cancer (Oliffe et al., 2009). This research also enabled us to detail how health literacy, a critical consideration for effectively mobilizing health promotion efforts (Nutbeam, 2008), was advanced at PCSGs. Interest in shared decision making and health consumerism prompted many men to research their prostate cancer, and seek counsel from group attendees who had experienced similar situations (Oliffe et al., 2008). In addition, the findings described how humor could promote men’s comfort and talk about health and illness while marking the boundaries for the level of detail and disclosure shared within the groups (Oliffe et al., 2009). Our interviews with women partners who attended PCSGs provided additional insights including how they bolster PCSG operation and derive much needed support from other women at the groups (Bottorff et al., 2008).

Despite the perceived benefits of attendance at PCSG for both men and their female partners, some groups were struggling to attract and retain members, maintain cohesive leadership, and provide up-to-date information (Oliffe et al., 2008). PCSG sustainability was strongly reliant on being a known resource in the community and to potential end-users; and the endorsement of health care providers and community partners was the key to encouraging new attendees. Having guest presenters with recognized expertise on a range of prostate cancer specific or general men’s health issues was also pivotal to attracting men and their partners to the group meetings as well as retaining long-term attendees. In addition, previously described barriers to attending PCSGs continued to influence participation and included both mechanistic (e.g., lack of transport, remote location, disability) and philosophical (e.g., loss of anonymity, fear of a focus on cathartic sharing) barriers.

Since PCSGs rely on patient attendance and to some extent HCP advocacy for PCSGs, a very important missing ingredient to sustain PCSGs is the sharing of research about the potential benefits of PCSGs with patients and health care providers, and important insights into effective approaches for engaging men in health promotion. Our research (Bottorff et al., 2008; Oliffe et al., 2008; Oliffe et al., 2009; Oliffe et al., 2010; Oliffe et al., 2011) was important in this respect because it was based on qualitative interviews with these target groups detailing their experiences of PCSGs. This research provided broadly positive but authentic accounts in which the ambiguities held by men affected by prostate cancer, their partners, and health care providers about this form of self-help group were retained. The research offered a window on the process of informed deliberation by users of the pros and cons of attending PCSGs as a self-help and mutual support strategy. Given that the incidence of prostate cancer is expected to rise with the aging population and the ever present pressures on health care systems, there is great potential for men who experience prostate cancer and their families to draw benefit from knowing about the services that PCSGs provide. While acknowledging that PCSGs do not appeal to all men or women, it is likely that some potential attendees are negatively influenced by a lack of information or misinformation about the services support groups offer. This KT project and chronicling our experiences here was inspired by our ambition toward: (a) reducing the burden on psychosocial oncology services by raising awareness of the services provided by PCSGs, (b) increasing life quality among some men who experience prostate cancer and their families, (c) hosting an important conversation about the challenges for sustaining these community based prostate cancer services, and (d) highlighting much needed empirical insights to an effective, strength-based approach to men’s psychosocial oncology health promotion. The gendered significance of internet technologies also cemented the case for the use of Web 2.0 technologies for KT. While acknowledging that men are a diverse patient group, a growing body of evidence suggests that men are especially attracted to the internet as a space to explore health and well-being advice (Robinson & Robertson, 2010; Robertson & Williams, 2010). Thus, Web 2.0 technologies offered a promising means for us to bridge the gap between the virtual support offered by the internet and the face to face support offered through PCSGs.

e-Knowledge Translation (e-KT)

While academic KT activities typically include peer-reviewed publications and conference presentations, these avenues mainly constitute diffusion (let it happen) and dissemination (help it happen) strategies (Graham, 2010). In essence, e-KT, and Web 2.0 applications more specifically, can garner KT application (make it happen) efforts whereby strategically repackaged study findings can be targeted to harness uptake and facilitate conversations between the knowledge producers and a range of targeted end-users. Drawing on social marketing principles, information technologies have also been touted as an effective means for reaching men with health messages (Robinson & Robertson, 2010). For example, many men use the internet as a first call for health information (Pollard, 2007), a trend attributed in large part to the private nature of electronic mediums (Robertson & Williams, 2010). In addition, rapidly changing aspects of “best practice” and strong interest in shared decision making, patient choice, and health consumerism have seen patients’ and HCP’s use the web for health information (Broom, 2005a, 2005c; Changrani & Gany, 2005; Hoybye et al., 2009; Tustin, 2010). In the context of PCSGs, the interactive nature of Web 2.0 features, aside from affording unique opportunities to message “hard to reach” men who experience prostate cancer, can also engage health care providers and potential attendees to signal the availability of these community-based resources.

Intrigued by the potential of Web 2.0 features and a term we coined—e-KT—we set about developing an interactive website, and in what follows five lessons learned are detailed, along with findings drawn from a formative evaluation based on data collected from Google™ and YouTube™ Analytics. By chronicling our experiences, the primary aim is to guide the e-KT efforts of other psychosocial oncology researchers and clinicians.

Formative Website Evaluation

Google™ Analytics was used to track visitors’ general usage patterns and YouTube™ Analytics was used to collect data about the video components of the website. This formative evaluation reports the data collected in the first 11 months post-release, October 22 through September 21, 2013, inclusive. General data regarding visitors, traffic sources, and content (e.g., number of visits, average time on website) were collected, and date ranges enabled monthly comparisons to be made to distil usage patterns and trends. Google™ and YouTube™ Analytics were also able to answer other more specific questions including (a) How many new and returning visitors are there, and from what geographic locales do website visits originate? (b) How do visitors find us and what browsers and devices do they use? (c) What pages and media are visitors most and least attracted to?

Visitor’s Locale and Pathways

In the first 11 months, there were 2,286 visits resulting in 5,318 page views (Mean = 2.33 pages/visit). Of these, 1,524 visits (66.7%) were new visits, and the average duration for all the visits was 2:51 minutes with a bounce rate (visitors leaving the website directly from the home page) of 56.2%. Direct traffic (i.e., visitors knowing and typing in the website address) led to 1,208 (52.8%) visits, referring websites were the pathway for 584 (25.6%) visits, and inputting keyword searches into search engines accounted for 488 (21.4%) visits. These trends demonstrate the importance of cross-media promotion through word-of-mouth and referring websites and also suggest that search engine marketing is critical to attracting visitors (Crutzen et al., 2009). Moreover, the duration of direct traffic visits was slightly higher than overall (2.51 vs. 2.33 pages/visit; average duration: 3:06 vs. 2:51 minutes). The top referring website was Facebook, followed by two men’s health websites, including the lead investigator’s homepage (www.menshealthresearch.ubc.ca). Furthermore, there were differences in terms of visitors’ pathways by geographical locale (Appendix Table A.1); 1,776 (77.7%) of the visitors to the website were from Canada and Canadian visitors stayed on the site for an average of 3:01 minutes with a bounce rate of 56.19%. The remaining 510 (22.3%) visits were from 43 countries including the United States (n = 217), Australia (n = 126), and the United Kingdom (n = 68). These non-Canadian visitors stayed on the site for an average of 2:51 minutes with a bounce rate of 56.17%. Visits originating from non-English countries (e.g., Germany, India, Israel, Brazil) had higher bounce rates, indicating that these visitors did not advance beyond the home page.

Page and Media Specific Visits

Of the 762 returning visitors, 238 visited twice, 244 visited three to eight times, and 280 visited nine or more times. The depth of visit as indicated by the page views revealed, on average, each visit led to 2.33 page views. Both new and returning visitors viewed two or more pages (2.18 and 2.61 pages respectively) but compared with new visitors, returning visitors tended to stay longer on the website (2:12 vs. 4:09 minutes, respectively). Figure 1 indicated, however, only 416 visits (18.2%) stayed on the site for 3 minutes or more—having a significant impact on the average. In terms of visitor loyalty, a total of 762 (33.3%) returning visitors suggest that the site content is engaging enough to attract a following.

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Figure 1.

Frequency and recency.

According to Google™ Analytics, the video page, which includes patient videos as well as researchers talking about the study findings and health care providers’ perspectives, was visited 416 times and visitors stayed for an average of 3:56 minutes. Additional details retrieved from YouTube™ Analytics indicated that the 38 videos were viewed 1,036 times in total, and 77.7% (n = 805) of the audience who was logged into their YouTube account at the time of viewing was male. It is important to note that only 15.2% (N = 157) of the 1,036 video views took place on the Prostate Cancer: Help Yourself website, whereas the majority (71.5%; n = 740) of the views were made on our YouTube site/channel (see Appendix Table A.2). Mobile devices accounted for 13.3% of the total views.

Discussion and Conclusion

Something which has been known for some time is that access to research findings, health information, and raising awareness of community-based prostate cancer services including PCSGs can empower a diverse range of knowledge end-users (Changrani & Gany, 2005; Fogel, 2003; Rozmovits & Ziebland, 2003; Tustin, 2010). Rapidly changing aspects of “best practice” amid strong interest in shared decision making, patient choice, and health consumerism has seen many men use the web for health information (Broom, 2005a, 2005c). Moreover, some studies examining patient–provider relationships conclude that accessing online health information can bolster patient–provider relations (Broom, 2005b; Handel, 2010; Stevenson, Kerr, Murray, & Nazareth, 2007; Wald, Dube, & Anthony, 2007). What is relatively new, however, is the general movement toward academic health researchers becoming involved in directly communicating their research findings to the broader public and/or targeted patient and health care provider subgroups.

Undoubtedly, there have been pioneers in the academic community, for example the Oxford University initiative, http://www.healthtalkonline. However, this article is timely because it comes at a time when KT has become a prevailing mantra and key consideration in assessing the usefulness of academic health research, a trend extolling all researchers to be creative in disseminating their findings more broadly in society, as distinct from forging peer affirmation within academic knowledge communities (Curran, Grimshaw, Hayden, & Campbell, 2011). Advancing psychosocial oncology research through e-KT strategies is in this respect exciting, but it is also a complex enterprise. This article is an attempt to provide researchers within cancer oncology and beyond practical and useful insights about how research findings can be translated online (i.e., e-KT) for patients, families, and health care providers. Our key lessons are summarized in Table 1.

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Table 1.

Psycho-Oncology e-KT Website Development—Five Lessons Learned.

1. Pitching a winning but feasible idea

•  Budget for researcher time to develop and edit content.

•  Obtain at least three itemized quotes from website development companies prior to deciding on project deliverables.

2. Keeping it consistently Web 2.0

•  Focus on interactivity.

•  Minimize text and avoid repetition.

•  Test to ensure protection from spam on forum.

3. Negotiating the supplier

•  Build in training of research staff to update, edit, and add content.

•  Meet regularly to revisit deliverables and timelines.

•  Anticipate supplier reductions and a cut off of support.

4. Pretests

•  Build in formal pretests and ensure time for amendments are contracted with the supplier.

•  Consider a pilot test with representatives from each end-user group ahead of launching.

5. Building in evaluation

•  Self-educate round customizing Google™ Analytics and YouTube™ Analytics

•  Assess what level of expertise the supplier has with regard to evaluating websites.

•  Analyze, report, and compare across time as a means to making adjustments to the website.

Effective KT derived from academic research is increasingly contingent on making knowledge available and engaging as well as being of benefit to nonacademic communities (Graham, Tetroe, & the KT Theories Research Group, 2007; Grol & Grimshaw, 2003). Similarly, our catalyst was a belief that there is a strong rationale for highlighting the empirical understandings of PCSGs through e-KT strategies to a range of end-users. As highlighted earlier, our research added to the psychosocial oncology literature by presenting findings about how those who attended PCSGs experienced them and what were the key factors in sustaining their existence over time. This case study is not presented as a model case study, but rather as an addition to the nascent science of e-KT in psychosocial oncology and beyond. Extant models of KT (Graham et al., 2007; Grol & Grimshaw, 2003) have suggested the need to involve users from the outset of the research process highlighting the power of networks to facilitate changes in the translation of knowledge to practice; yet surprisingly little attention has been given to the potential of Web 2.0 technologies in optimizing KT in academic research (Di Noia, Schwinn, Dastur, & Schinke, 2003). Our experiences with e-KT suggests that, in common with broader KT models, researchers need to adopt a systems thinking approach (Leischow et al., 2008) to ensure that internet sites are both efficiently marketed and linked to a community of referral networks of care to reach patients and health care providers in need of information. e-KT offers the potential to visibly involve knowledge users from the outset of the research process by, for example, gaining consent from research participants to become the presenters and mediators of the research to a broader public on-line. In the specific context of PCSGs, Web 2.0 allowed us to present excerpts of users’ deliberations about the benefits and drawbacks of attending PCSGs and garnered a dialogue about the pros, cons, and challenges for a psychosocial oncology intervention that has prevailed for more than 20 years. In addition, the use of online forums offers the possibility for the knowledge exchange to continue through practice communities well beyond the end of the research study. Overall, our findings confirm that e-KT can be an innovative approach to psychosocial oncology research in extending the influence and impact of research findings (Chou, Prestin, Lyons, & Wen, 2013).