**4.5.1 Clinical vignettes**

56 Prostate Cancer – Diagnostic and Therapeutic Advances

As described above, the process of becoming prostate-cancer literate unfolded along the lifedeath continuum; levels of health literacy (from low to high); levels of contact with information networks (from no contact to creation of one's own information network); and illness experiences within or outside information networks. Men's information strategies came out of the desire to preserve their moral integrity, self-image, and to maintain their social roles (as husbands, fathers, grandfathers, friends, and peer counsellors). Awareness of loss, regret, deception, and hope encouraged older men to remain in their social roles, while sharing their wisdom about how to live well1 with prostate cancer (Zanchetta, 2004). Living well with prostate cancer included creating a new body free of embarrassing conditions (e.g., urinary incontinence), a new masculinity, and a new perception of control. Living well also included redefining one's sense of successful adaptation and, most important, adopting new familial and other social roles while being aware of one's own vulnerability (Kelly, 2009). Men's experience with uncertainty throughout their prostate cancer trajectory was affected by their knowledge about the disease, the disease's stage, and the availability of informal support networks (Nanton et al., 2009). These factors may, in turn, have affected

One of older men's primary goals was to understand their illness experiences, an understanding which would enable them to tackle their other primary goal: to regain decisional power over their own bodies and destiny. Guided by hope of surviving prostate cancer, older men decided either to make their journey solitary or collective – experiences shared with family, friends, peers, and strangers. It was between these two extremes of experience with prostate cancer that construction of new social roles, even new social identities, occurred. These new roles and identities preserved the integrity of men's

Men reborn out of collective prostate-cancer journeys distinguished between sharing their own experiences and transmitting information about prostate cancer. They also discerned with which strangers to talk about their experiences of prostate cancer and with which strangers to share its private issues. In contrast, men emerging out of solitary prostatecancer journeys felt unprotected from the dehumanizing health care system and its professionals. They felt restrained in their freedom to share their cancer experiences with others and believed that silence among men about prostate cancer was natural. Despite these differences in men's preferences for living with prostate cancer, we can identify in the participants' accounts the same underlying rationale. Men's decisions about disclosing their experience with prostate cancer were explained by the intensity of their wishes, as fathers

**4.4 Contributions of this research to the practice of social and health professionals**  The research findings described in Section 4 may challenge clinicians' perception that academic education level is the only indicator of patients' ability to understand health information and that less educated patients will be unable to do so. For example,

1 Because none of the research participants was free of prostate cancer, it is beyond the scope of this section to discuss men's perspectives on being free of the disease, feeling safe, or having the disease

masculine self-images, despite suffering related to loss of sexual functioning.

and husbands as well as friends, to protect their loved ones from worry.

**4.3 Ultimate goals in constructing information strategies for becoming prostate-**

**cancer literate** 

under control.

men's desire to survive prostate cancer.


Renewing Perspectives on Men's Prostate Cancer

health information.

lives in a meaningful way.

Literacy and Engagement Along the Disease Continuum 59

life. This learning experience, framed by community features, seems to be particularly critical to older individuals living with cancer, because they report decreased social and community involvement as well as shrinking social networks (Houldin & Wasserbauer, 1996). Cutilli and Bennett (2009) demonstrated that men perform worse than women on health-literacy-assessment tests, due to factors such as education, language, income, information-seeking behavior, and type of health insurance. For older men, such predictors of low performance on health literacy assessments are particularly relevant, because marital status, education, and perceived health status predict health-information seeking (Elder et al., 2010). Low literate individuals tend to have difficulty understanding health information and using the health care system. The reasons for this difficulty include (a) limited comprehension of written and verbal health information, (b) not trusting written health information and preferring to gather health information through personal communication, (c) inability to understand health terms and concepts, (d) insufficient information about the health system, and (e) feelings of shame and embarrassment in revealing their limitations (Health Canada, 1999). The paramount issue, low health literacy, seems to be related to cultural, cognitive, and social aspects of having access to, understanding, and using health information (Oldfield & Dreher, 2010). In particular, low literate individuals who have low levels of numeracy and general knowledge may have difficulty dealing with treatmentrelated information containing ratios, probabilities, or percentages. Such information, about cures, treatment complications, and/or side effects, is usually given to patients in the contexts of decision making or informed consent. Certainly, one's ability to understand complex health information can either undermine or enhance one's interest in gathering

Studies have also demonstrated that older men consider information on self-management of their diseases too superficial (Walker et al., 1998), especially because of aging-related problems such as cognitive impairment and decrease in vitality. The search for, processing of, incorporation of, and meaning attached to health information seems to be directly affected by older men's level of disease awareness (Morasso et al., 1997), which may decline with cognitive impairment. The nature of prostate cancer treatment demands that health professionals provide clinical education that responds to older men's knowledge deficits and addresses the physical and psychological problems men experience after treatment (Miaskowski, 1999). For example, men who undergo cryosurgical ablation of the prostate may face complications, such as urethrorectal fistulae, bladder-outlet-obstruction incontinence, impotence, and urinary tract infections. Radical prostatectomy may lead to anxiety, bladder spasms, pain, high risk of hemorrhage, and pulmonary embolisms. The complications surrounding external beam radiation include fatigue, diarrhea, and cystitis. Finally, hormone therapy leads to impotence, hot flashes, gynecomastia, and high risk of pathologic fractures (Giddens, 2004). The impact of such complications can affect men's self-image, and dealing with complex medical information can become challenging for older men. To become health literate, they must make sense of health information, find congruency between their past and new knowledge (Craig, 1987), and incorporate health information into their daily

Interestingly, incorporation of new knowledge about prostate cancer and other medical issues differs according to men's self-reported level of health literacy and unfolds within the

#### **Questions**

