**4.2.3 Strategies men use to make sense of prostate cancer information**

Men's use of hypothesizing and of deductive and inductive reasoning varied in intensity and frequency, depending on older men's self-rated level of health literacy and the uncertainty they faced about their medical conditions. Men's use of these analytical techniques was congruent with their tendency to assess information logically by seeking to understand events and facts and by decoding large amounts of (sometimes contradictory) prostate cancer information. The intensity and frequency of men's hypothesizing, deduction, and induction seemed to be associated with the importance they attributed to the process of decision making, regardless of its domain. The cognitive processes of hypothesizing and deducting also influenced men's acceptance or refusal of prostate cancer information, because men selected information based on their values. Selecting, valuing, and incorporating prostate cancer information, and other information indirectly related to prostate cancer, can be explained by men's increasing interest in information seeking. Men's main focus was learning what to do to ensure their survival and how to do it. This focus led men to value what could help them understand clinical facts. Men sought to find, in each piece of prostate cancer information, anything that could contribute to a pragmatic plan for surviving cancer. Men valued information that was personally relevant to them and could contribute to decision-making. In this information-selection process, men's participation in information networks and the information support that they received from significant others were important.

Men's constant hypothesizing seemed to be an attempt to understand and compare information from multiple sources, information that created doubts in their minds. With these doubts, men constantly struggled to reduce abstraction and uncertainty in the information they gathered. The difficulty with abstraction related most often to descriptions of cellular processes and cell-level responses to treatment, as expressed by levels of PSA, prostate cancer recurrence, and metastasis. Without being able to understand this complex information, men could not evaluate its pertinence and quality.

Renewing Perspectives on Men's Prostate Cancer

prostate cancer information.

improved the quality of their lives.

Fig. 6. Dynamics of living with prostate cancer-related information

Literacy and Engagement Along the Disease Continuum 55

specifically into self-assessment and self-monitoring. Men valued information that responded to their pragmatic needs, rather than theoretical information that was difficult to decode. Once

The quality of prostate cancer information was another factor men used to evaluate the credibility of information sources and whether or not to accept information from them. When men perceived new information to be high quality, even if it contradicted information that they deemed valuable, they were open to comparing it to contradictory information. The issues of quality, criticism, and acceptance explained men's unwavering acceptance of medical diagnoses of prostate cancer, their strong tendency not to seek second medical opinions, and their unconditional acceptance of medical therapies recommended by their physicians. Moreover, other issues were at play in this process: men's lack of knowledge about the disease and its medical treatment, trust in the technical competence and scientific knowledge of their physicians, and what value men placed on

Figure 6 displays the dynamics of how men lived their daily lives (outside of hospitals and clinics) with the prostate cancer information they gathered through information networks. Men's prostate cancer literacy depended on the effects of experiences with prostate cancer within or outside such networks. Men would create and be part of information networks to build their individualized knowledge about prostate cancer. Being part of information networks helped them understand and make meaning out of their own illness experiences. Men's understanding of the disease was a shared construction of experiences of others in their immediate social environment. This shared construction filled men's knowledge gaps and resolved misunderstandings, allowing men to construct new social roles inspired by their awareness of the need to share knowledge and gain empirical skills to manage prostate cancer. Therefore, men tended to transmit information about the prevention and early detection of prostate cancer, as well as how men already touched by the disease had

they found enough information to answer their questions, men stopped searching.

Men needed to evaluate this information to construct meaning by comparing it to their own health experiences, as well as with health and prostate cancer information they had already gathered. Figure 5 displays the key factors that influenced the way older men lived with prostate cancer information.

Fig. 5. Key factors influencing the way men live with prostate cancer-related information

#### **4.2.4 Key factors underlying older men's information strategies**

For older men, the utility of all information men found relevant was its contribution to solving problems, filling knowledge gaps, and helping men learn how to live with prostate cancer. The relevance individual men attributed to information revealed differences among older men in their critical attitudes to the information they gathered. Men either focused on analyzing the information's technical content or applied the information to political and collective aspects of men's experiences with prostate cancer.

These critical attitudes revealed how men came in contact with and joined information networks to explore their social environments. Men who had little or no contact with sources of health information other than their urologists lived in cognitive isolation. On the other hand, men who gradually constructed networks comprising health professionals (other than urologists) and lay people slowly incorporated new knowledge into their lives through collective learning and exchanging experiences, knowledge that supplemented and complemented information from their urologists.

Incorporation of information into men's lives was a goal shared by men with prostate cancer and other individuals who were directly or indirectly involved with their new lives after medical recovery. Before being able to decode prostate cancer information, some men confronted the reality that other men and women live with cancer that was more or less severe than theirs. This confrontation raised men's awareness of the potential impact of prostate cancer on their own lives. Comparing their lives to the lives of others allowed men to ascertain the relevance of prostate cancer information and incorporate it into their daily lives,

Men needed to evaluate this information to construct meaning by comparing it to their own health experiences, as well as with health and prostate cancer information they had already gathered. Figure 5 displays the key factors that influenced the way older men

Fig. 5. Key factors influencing the way men live with prostate cancer-related information

For older men, the utility of all information men found relevant was its contribution to solving problems, filling knowledge gaps, and helping men learn how to live with prostate cancer. The relevance individual men attributed to information revealed differences among older men in their critical attitudes to the information they gathered. Men either focused on analyzing the information's technical content or applied the information to political and

These critical attitudes revealed how men came in contact with and joined information networks to explore their social environments. Men who had little or no contact with sources of health information other than their urologists lived in cognitive isolation. On the other hand, men who gradually constructed networks comprising health professionals (other than urologists) and lay people slowly incorporated new knowledge into their lives through collective learning and exchanging experiences, knowledge that supplemented and

Incorporation of information into men's lives was a goal shared by men with prostate cancer and other individuals who were directly or indirectly involved with their new lives after medical recovery. Before being able to decode prostate cancer information, some men confronted the reality that other men and women live with cancer that was more or less severe than theirs. This confrontation raised men's awareness of the potential impact of prostate cancer on their own lives. Comparing their lives to the lives of others allowed men to ascertain the relevance of prostate cancer information and incorporate it into their daily lives,

**4.2.4 Key factors underlying older men's information strategies** 

collective aspects of men's experiences with prostate cancer.

complemented information from their urologists.

lived with prostate cancer information.

specifically into self-assessment and self-monitoring. Men valued information that responded to their pragmatic needs, rather than theoretical information that was difficult to decode. Once they found enough information to answer their questions, men stopped searching.

The quality of prostate cancer information was another factor men used to evaluate the credibility of information sources and whether or not to accept information from them. When men perceived new information to be high quality, even if it contradicted information that they deemed valuable, they were open to comparing it to contradictory information. The issues of quality, criticism, and acceptance explained men's unwavering acceptance of medical diagnoses of prostate cancer, their strong tendency not to seek second medical opinions, and their unconditional acceptance of medical therapies recommended by their physicians. Moreover, other issues were at play in this process: men's lack of knowledge about the disease and its medical treatment, trust in the technical competence and scientific knowledge of their physicians, and what value men placed on prostate cancer information.

Figure 6 displays the dynamics of how men lived their daily lives (outside of hospitals and clinics) with the prostate cancer information they gathered through information networks. Men's prostate cancer literacy depended on the effects of experiences with prostate cancer within or outside such networks. Men would create and be part of information networks to build their individualized knowledge about prostate cancer. Being part of information networks helped them understand and make meaning out of their own illness experiences. Men's understanding of the disease was a shared construction of experiences of others in their immediate social environment. This shared construction filled men's knowledge gaps and resolved misunderstandings, allowing men to construct new social roles inspired by their awareness of the need to share knowledge and gain empirical skills to manage prostate cancer. Therefore, men tended to transmit information about the prevention and early detection of prostate cancer, as well as how men already touched by the disease had improved the quality of their lives.

Fig. 6. Dynamics of living with prostate cancer-related information

Renewing Perspectives on Men's Prostate Cancer

identity.

**4.5.1 Clinical vignettes** 

Literacy and Engagement Along the Disease Continuum 57

sometimes physicians' communication style (e.g., rapid transmission of brief information, underestimating men's capacity to capably make decisions) can push men to adopt a critical, reflective attitude toward the information physicians transmit. In the research described above, this paradox supported older men's determination to educate themselves about prostate cancer and general health. Therefore, social and health professionals should view men's process of becoming prostate cancer literate as a collective, affective, and social process involving other men, women, and other significant others. Medical information about treatment options and their impacts on sexual health is less important to men with prostate cancer than prostate cancer's impacts on men's social

In Section 4, we discussed how men construct their prostate cancer literacy throughout the disease process. Below are some accounts to guide readers' reflection about the multiple dimensions of literacy that underpin the process of becoming prostate cancer literate. There are no correct answers to the reflection questions. We hope that reflecting on your own

 Michael, a 56-year-old underground miner, was recently diagnosed with prostate cancer. He arrives at an appointment with his oncologist to discuss treatment options. Michael is presented with two options: hormone therapy and orchiectomy. The oncologist discusses the potential outcomes of each of these options. Michael is quite concerned about hormones' possible side effects, such as hot flashes, growth of the mammary glands, and reduction in sexual stamina. Neither option is particularly appealing to Michael. He decides that he needs time to consider the treatment options

 Frank, a 67-year-old retired postal worker, shares with his doctor his experience of participating in a support group for men undergoing prostate cancer treatment. At first he thought this group might be a good source of support as he navigated the often complex world of prostate cancer treatment. After attending a few meetings, however, he discovered that all the men in the support group do is complain. He was also surprised that their complaints were not about discomfort or side effects that they had experienced as a result of their treatments but, instead, about their difficulties getting

 Raymond, a 51-year-old registered nurse, was diagnosed with prostate cancer six months ago. He began hormone therapy two months ago. As a health care professional, his is well acquainted with medication side effects. During a routine follow-up visit with his urologist, Raymond reports that he has been experiencing numerous side effects which he believes are related to the hormone therapy. In addition, and perhaps more concerning, is the fact that his sex drive has severely diminished and he is now experiencing erectile dysfunction. His symptoms are so intense that he finds himself unable to work. He reports that he has been doing some reading on alternative and more natural methods of treatment and wants to discuss discontinuing his hormone therapy. He tells the urologist that his quality of life is so affected by the hormone

**4.5 Reflecting on men's accounts of constructing prostate cancer literacy** 

experience as health care professionals will help you answer the questions.

and discuss them with his wife of 30 years.

information and answers to their questions.

therapy that he is not willing to continue living like this.

#### **4.3 Ultimate goals in constructing information strategies for becoming prostatecancer literate**

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 men's desire to survive prostate cancer.

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

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

#### **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,

<sup>1</sup> 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 under control.

sometimes physicians' communication style (e.g., rapid transmission of brief information, underestimating men's capacity to capably make decisions) can push men to adopt a critical, reflective attitude toward the information physicians transmit. In the research described above, this paradox supported older men's determination to educate themselves about prostate cancer and general health. Therefore, social and health professionals should view men's process of becoming prostate cancer literate as a collective, affective, and social process involving other men, women, and other significant others. Medical information about treatment options and their impacts on sexual health is less important to men with prostate cancer than prostate cancer's impacts on men's social identity.
