**5. Health literacy: Impact on survival of the prostate cancer patient, significant others, and clinicians**

Health professionals demonstrate growing interest in the functional aspect of health literacy (Oldfield, & Dreher, 2010), despite their concomitant concern about how to assess and deal with it in daily professional practice. According to Peerson and Saunders (2009), "Because health literacy involves knowledge, motivation and activation, it is a complex thing to measure and to influence" (p. 285). Professionals' interest in health literacy focuses on individuals' understanding of health messages, which can enable them to participate more actively in their treatment and be successful in self-management of their illnesses. For years, research on the multiple factors related to health literacy has been guided by several conceptual and theoretical models: information seeking (Bagley-Burnett, 1992; Lenz, 1984), information needs (Derdiarian, 1987), uncertainty in illness (Mishel, 1990), and unaided decisions in health care (Pierce, 1996). Relevant psychological features of information-seeking behavior were explored in some seminal studies. These features are anxiety, resulting in the tendency to attribute responsibility for decision making to others; avoidance or receptivity to learning about one's disease; motivation to seek diseasespecific information; and attributing the cause of cancer to fate or personal fault (Lavery & Clarke, 1999; Siegel & Raveis, 1997; Walker et al., 1996). Furthermore, studies have shown that representations of a disease tend to shape individuals' preferences for the type, amount, nature, and use of health information (Fieler et al., 1996; Gollop, 1997a, 1997b; Griffiths & Leek, 1995; Ko et al., 1997; Meischke & Johnson, 1995). Other studies opened new avenues for understanding individuals' preferences for the content of health information: the *how, when, why, who,* and *where* of prognosis, treatments, management, and control of illness (Chalmers et al., 1996; Davison & Degner, 1997; Fieler et al., 1996; Hack et al., 1994; Shaw et al., 1994).

### **5.1 Health literacy as a survival tool for the patient**

If patients' ultimate goal in obtaining health information is to survive, health literacy plays a key role in individuals' sense of self-determination (Zanchetta, & Moura, 2006) and in their ability to deal with illness uncertainty (Zanchetta, 2005). Despite the impressive number of studies related to learning about health issues, few researchers have explored the influences of health learning on individuals' illness experiences within the context of their community

What new facilitators for learning can professionals give men, to help them decode

 How should professionals incorporate discussion about issues of masculinity when teaching men about modalities of screening, monitoring, treatment, and

What are the advantages, for professionals, of learning about how men construct

 What innovations should be introduced into prostate-cancer-teaching practices to move from a treatment-focused teaching toward a gender- focused approach? Which simple strategies could you create to assess the health literacy of men with

Health professionals demonstrate growing interest in the functional aspect of health literacy (Oldfield, & Dreher, 2010), despite their concomitant concern about how to assess and deal with it in daily professional practice. According to Peerson and Saunders (2009), "Because health literacy involves knowledge, motivation and activation, it is a complex thing to measure and to influence" (p. 285). Professionals' interest in health literacy focuses on individuals' understanding of health messages, which can enable them to participate more actively in their treatment and be successful in self-management of their illnesses. For years, research on the multiple factors related to health literacy has been guided by several conceptual and theoretical models: information seeking (Bagley-Burnett, 1992; Lenz, 1984), information needs (Derdiarian, 1987), uncertainty in illness (Mishel, 1990), and unaided decisions in health care (Pierce, 1996). Relevant psychological features of information-seeking behavior were explored in some seminal studies. These features are anxiety, resulting in the tendency to attribute responsibility for decision making to others; avoidance or receptivity to learning about one's disease; motivation to seek diseasespecific information; and attributing the cause of cancer to fate or personal fault (Lavery & Clarke, 1999; Siegel & Raveis, 1997; Walker et al., 1996). Furthermore, studies have shown that representations of a disease tend to shape individuals' preferences for the type, amount, nature, and use of health information (Fieler et al., 1996; Gollop, 1997a, 1997b; Griffiths & Leek, 1995; Ko et al., 1997; Meischke & Johnson, 1995). Other studies opened new avenues for understanding individuals' preferences for the content of health information: the *how, when, why, who,* and *where* of prognosis, treatments, management, and control of illness (Chalmers et al., 1996; Davison & Degner, 1997; Fieler et al., 1996;

If patients' ultimate goal in obtaining health information is to survive, health literacy plays a key role in individuals' sense of self-determination (Zanchetta, & Moura, 2006) and in their ability to deal with illness uncertainty (Zanchetta, 2005). Despite the impressive number of studies related to learning about health issues, few researchers have explored the influences of health learning on individuals' illness experiences within the context of their community

personally relevant meaning from prostate cancer information?

**5. Health literacy: Impact on survival of the prostate cancer patient,** 

**Questions** 

prostate cancer information?

prostate cancer in your clinical practice?

**significant others, and clinicians** 

Hack et al., 1994; Shaw et al., 1994).

**5.1 Health literacy as a survival tool for the patient** 

rehabilitation?

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 health information.

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 lives in a meaningful way.

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

Renewing Perspectives on Men's Prostate Cancer

of treatment of prostate cancer.

Epidemiology

Screening procedures

Causes

Knowledge issues

**Theme Questions** 

degree of importance?

one have an examination?

Is there any link with stress?

What is serum testosterone?

examinations?

cancer?

When must one begin PSA testing?

Could a vasectomy cause prostate cancer? Could hormone therapy cause prostate cancer?

What does a gland full of granulomatosis mean?

Is there another type of testosterone? What is its source of production?

Why do the rates of prostate cancer increase? What are the environmental risk factors?

Are the risk factors presented in the slides in conformity with their

Is there something that one can do about the family risks factors? What is the most dangerous type of cancer? Rectal, bladder, or prostate?

What do you recommend as preventive action? After what age must

After the age of 50, what is the suggested interval between

Does drinking alcoholic beverage cause prostate cancer? Does bleeding during the biopsy transmit cancer?

Is it true that sitting for long periods may cause prostate cancer?

What are the meanings of the letters and degrees used to classify

Literacy and Engagement Along the Disease Continuum 61

Zanchetta (2002) observed, during a community information session with a total of 50 participants (women, and men with and without prostate cancer) about the epidemiological, treatment, and rehabilitation aspects of prostate cancer, that most men's questions were about technical procedures. These questions indicated lack of comprehension, difficulty with basic interpretation of the medical content of health information, and knowledge gaps, and thereby revealed the participants' world of living with prostate cancer. Table 2 gives the questions men asked, in their original form and grouped into themes. In the same study, men's learning needs were raised by two chairmen of a prostate cancer support group, who had compiled the accounts of several other men. The chairmen said that becoming literate about prostate cancer is not a linear, one-dimensional process. According to them, men become aware of their lack of knowledge about prostate cancer and motivated to seek information about it for the following reasons: (a) acknowledgment that, for men, ageing is usually accompanied by prostate problems, (b) symptoms of excessive prostate enlargement launch information seeking about early signs/symptoms of prostate cancer, (c) men's new awareness of their vulnerability to disease after receiving a prostate cancer diagnosis, (d) receiving information about treatment side effects and their impacts on men's lives, (e) men's perception and experience of treatment and its side-effects, (f) recurrence of prostate problems after treatment, and (g) psychological and social impacts

multiple, interconnected dimensions of their lives. Zanchetta (2002) showed that health information is incorporated into daily life only if it is congruent with the following factors: men's individual identities; their social trajectories within a specific masculine identity, health-education experience, and life stories; representations of aging, body, cancer/prostate cancer, and health/illness. Table 1 summarizes key definitions of health literacy applicable to learning about prostate cancer in a clinical context.

As consumers of prostate cancer information, men with prostate cancer reveal common strategies for using information (Zanchetta, 2004). Older men tend to perceive prostate cancer as an innocuous disease and react nonchalantly to prostate cancer diagnosis. They usually receive partial information and lack comprehension of clinical conditions and/or the evolutionary stages of prostate cancer. Nonetheless, they enjoy reading, which leads to an interest in reading books about other men's experiences with prostate cancer, the prostate gland, prostate-cancer survival, prognosis, and treatments. They also enjoy learning about principles of chemotherapy, preparation for undergoing chemotherapy and its effects, and modes of adaptation to prostate cancer. They do not believe information displayed in medical pamphlets, due their lack of identification of the pamphlet's authors. Frequently, older men assess their own clinical conditions and the effectiveness of their treatments by tracking changes in their PSA test results. They tend not to seek second opinions from urologists other than their own to either confirm the need for therapy or the quality of scientific evidence in health information. However, men correlate the health information they have with new information they find. Finally, because older men value their physicians' professional competence and trust them, men do not gather health information from other (formal or informal) sources (Zanchetta, 2002).

#### **Conceptual definitions of health literacy – ability to:**

Access, read, or listen to; process; and appraise textual, graphic, and numeric health information.

Build new meanings from health information.

Understand health messages and communicate them in users' social environments. Navigate the health care system.

Use textual, numeric, and graphic health information to inform decision making, reduce health risks, and enhance quality of life.

Use health information to access health care in a medical culture that requires selfdefense and health vigilance.

Evaluate and communicate health information to improve one's own and one's family's life.

Solve health problems by using multiple forms of language (written, oral, visual, tactile, etc.), at multiple levels (individual, family, community, world) and in multiple contexts (home, work, school).

Use all family, school, social, cultural, and professional assets gathered through continual learning (formal or informal), through regular contact with information, knowledge, attitudes, and health behaviors in all aspects of life.

Source: Kaszap & Zanchetta (2009)

Table 1. Conceptual definitions of health literacy

multiple, interconnected dimensions of their lives. Zanchetta (2002) showed that health information is incorporated into daily life only if it is congruent with the following factors: men's individual identities; their social trajectories within a specific masculine identity, health-education experience, and life stories; representations of aging, body, cancer/prostate cancer, and health/illness. Table 1 summarizes key definitions of health literacy applicable

As consumers of prostate cancer information, men with prostate cancer reveal common strategies for using information (Zanchetta, 2004). Older men tend to perceive prostate cancer as an innocuous disease and react nonchalantly to prostate cancer diagnosis. They usually receive partial information and lack comprehension of clinical conditions and/or the evolutionary stages of prostate cancer. Nonetheless, they enjoy reading, which leads to an interest in reading books about other men's experiences with prostate cancer, the prostate gland, prostate-cancer survival, prognosis, and treatments. They also enjoy learning about principles of chemotherapy, preparation for undergoing chemotherapy and its effects, and modes of adaptation to prostate cancer. They do not believe information displayed in medical pamphlets, due their lack of identification of the pamphlet's authors. Frequently, older men assess their own clinical conditions and the effectiveness of their treatments by tracking changes in their PSA test results. They tend not to seek second opinions from urologists other than their own to either confirm the need for therapy or the quality of scientific evidence in health information. However, men correlate the health information they have with new information they find. Finally, because older men value their physicians' professional competence and trust them, men do not gather health information

**Conceptual definitions of health literacy – ability to:** 

Access, read, or listen to; process; and appraise textual, graphic, and numeric health

Understand health messages and communicate them in users' social environments.

Use textual, numeric, and graphic health information to inform decision making,

Use health information to access health care in a medical culture that requires self-

Evaluate and communicate health information to improve one's own and one's

Solve health problems by using multiple forms of language (written, oral, visual, tactile, etc.), at multiple levels (individual, family, community, world) and in multiple

Use all family, school, social, cultural, and professional assets gathered through continual learning (formal or informal), through regular contact with information,

knowledge, attitudes, and health behaviors in all aspects of life.

to learning about prostate cancer in a clinical context.

from other (formal or informal) sources (Zanchetta, 2002).

Build new meanings from health information.

reduce health risks, and enhance quality of life.

Navigate the health care system.

defense and health vigilance.

contexts (home, work, school).

Table 1. Conceptual definitions of health literacy

Source: Kaszap & Zanchetta (2009)

information.

family's life.

Zanchetta (2002) observed, during a community information session with a total of 50 participants (women, and men with and without prostate cancer) about the epidemiological, treatment, and rehabilitation aspects of prostate cancer, that most men's questions were about technical procedures. These questions indicated lack of comprehension, difficulty with basic interpretation of the medical content of health information, and knowledge gaps, and thereby revealed the participants' world of living with prostate cancer. Table 2 gives the questions men asked, in their original form and grouped into themes. In the same study, men's learning needs were raised by two chairmen of a prostate cancer support group, who had compiled the accounts of several other men. The chairmen said that becoming literate about prostate cancer is not a linear, one-dimensional process. According to them, men become aware of their lack of knowledge about prostate cancer and motivated to seek information about it for the following reasons: (a) acknowledgment that, for men, ageing is usually accompanied by prostate problems, (b) symptoms of excessive prostate enlargement launch information seeking about early signs/symptoms of prostate cancer, (c) men's new awareness of their vulnerability to disease after receiving a prostate cancer diagnosis, (d) receiving information about treatment side effects and their impacts on men's lives, (e) men's perception and experience of treatment and its side-effects, (f) recurrence of prostate problems after treatment, and (g) psychological and social impacts of treatment of prostate cancer.


Renewing Perspectives on Men's Prostate Cancer

redefining the meaning of prostate cancer.

of frustration and regret.

**literacy** 

normalcy in their lives.

Literacy and Engagement Along the Disease Continuum 63

adequately comprehend medical information, consider available alternatives, and reflect on the potential outcomes of their decisions. Such an investment of time will ultimately generate a greater sense of control over men's life choices and a greater degree of

The impact of a prostate cancer diagnosis on couple and family dynamics is frequently reported in the scientific literature. However, other than shared stress, other experiences of men's significant others with prostate cancer information remain poorly explored. Men themselves report feeling embarrassed in revealing to their wives that prostate-biopsy results confirm their urologists' suspicion of prostate cancer (Zanchetta, 2004). Another gap in the literature concerns partners' unidentified or unmet information needs (Sinfield et al., 2008). For partners, becoming prostate-cancer literate would facilitate their participation in decision making as well as collaboration in all stages of treatment – as information gatherers, care providers, promoters of adherence with treatments, and even advocates for health and social services. As most of partners of men with prostate cancer are women, likely also elderly and living with their own diseases, we can expect that men's partners are knowledgeable consumers of health services who are able to sustain their partners' struggles to learn about prostate cancer. Because close interpersonal relationships influence illness experiences and transform the solitary cancer journey into a joint experience (Illingworth et al., 2010), partners can discover, learn about, and transcend limitations to

Another impact of prostate cancer literacy is men's decision to share their illness experiences with their sons. This decision relates to genetic predisposition to cancer, early detection, and screening procedures (Zanchetta, 2002, 2004). However, a "code of silence between men" can prevent disclosure of diagnosis. In Zanchetta's (2002) study, decision to inform sons and sons was explained from two opposite perspectives. Fathers who shared their illness experiences with their sons did so because of feelings of fatherhood and its perceived inherent responsibilities, and a concomitant desire to protect their sons. These fathers were concerned about the possibility of another case of prostate cancer in the family, felt confident in talking about prostate cancer, valued talking about illness experience to improve their own well-being, and perceived themselves as being open minded. Fathers who did not share their illness experiences with their sons felt unable to discuss parental subjects with their children, did not want to upset their sons with the daily problems caused by prostate cancer, felt that their sons were not concerned about prostate cancer, and had difficulty revealing personal experiences that provoked feelings

**5.3 Surviving multiple professional challenges to sustain men's prostate cancer** 

Health professionals utilize evidence-based practice to bridge the theory–practice gap and to guide patient care with the best available evidence (Paley et al., 2007). The goal of health and social professionals in the prostate cancer care continuum (screening, detection/diagnosis, treatment, rehabilitation) is to provide instrumental care and information that combines effective medical and social science with optimal technology,

**5.2 Impact of men's prostate cancer literacy on their significant others** 


Table 2. Scope of men's questions about prostate cancer

Men may also learn about prostate cancer through the collective experience offered in prostate cancer support groups. In these support groups, men learn from each other as well as from invited speakers; exchange information and experience; offer and obtain mutual help, advice, and support; and advocate for their rights as health consumers and citizens. Despite these multiple opportunities, some men still believe that other men come together in prostate cancer support groups to complain and cry "like a woman" (F. S. and W. K., personal communication, Kingston, Canada, March 2004). Such a misconception may explain why men from ethnic minorities tend not to enrol in prostate cancer support groups and why some men only attend them after treatment, despite their physicians' recommendations or referrals. In other cases, doctors referred men to prostate cancer support groups after treatment, which may imply that these men decided on treatments with only partial knowledge of their consequences and later regretted their decisions (D. G., personal communication, Montreal, Canada, June 2001).

Other ethno-cultural influences also influenced study participants' behavior related to prostate cancer. First, most of the Caucasian men (who self-identified as being of European descent) were socially expected to keep silent about disease and any suffering. Second, their mothers taught them to promote their own health and take preventive action against diseases, mainly through nutrition (Zanchetta et al., 2004). Given such expectations of stoic silence, men need professional mentoring and assistance to acknowledge that time is required to deal effectively with the diagnosis of prostate cancer,

Can a prostate cancer diagnosis be made using a blood test? If the cancer is in its beginning stage, can a biopsy indicate its

Does the presence of blood in the sperm indicate prostate cancer?

Does an examination exist that allows us to see the whole prostate? During a rectal examination, does the physician feel just a part of the

Can a physician identify prostate cancer simply by looking at the

How is the result of an echography analyzed with the PSA? What can one do after having lymph nodes removed? Is radiation therapy applied through the rectum?

What is the likelihood of bleeding after radiation therapy?

Does the PSA have another type of utility? Could it indicate another

How can one see the prostate with an echography?

**Theme Questions** 

Self-assessment Does prostate irritation mean prostate cancer?

What does a rectal examination indicate? What justifies the removal of the testes?

Is chemotherapy as efficient as surgery?

What are the normal limits of the PSA test?

Men may also learn about prostate cancer through the collective experience offered in prostate cancer support groups. In these support groups, men learn from each other as well as from invited speakers; exchange information and experience; offer and obtain mutual help, advice, and support; and advocate for their rights as health consumers and citizens. Despite these multiple opportunities, some men still believe that other men come together in prostate cancer support groups to complain and cry "like a woman" (F. S. and W. K., personal communication, Kingston, Canada, March 2004). Such a misconception may explain why men from ethnic minorities tend not to enrol in prostate cancer support groups and why some men only attend them after treatment, despite their physicians' recommendations or referrals. In other cases, doctors referred men to prostate cancer support groups after treatment, which may imply that these men decided on treatments with only partial knowledge of their consequences and later regretted their decisions (D. G.,

Other ethno-cultural influences also influenced study participants' behavior related to prostate cancer. First, most of the Caucasian men (who self-identified as being of European descent) were socially expected to keep silent about disease and any suffering. Second, their mothers taught them to promote their own health and take preventive action against diseases, mainly through nutrition (Zanchetta et al., 2004). Given such expectations of stoic silence, men need professional mentoring and assistance to acknowledge that time is required to deal effectively with the diagnosis of prostate cancer,

presence?

prostate?

prostate?

type of disease?

Table 2. Scope of men's questions about prostate cancer

personal communication, Montreal, Canada, June 2001).

Diagnostic procedures

Technical procedures

Interpretation of PSA titration levels adequately comprehend medical information, consider available alternatives, and reflect on the potential outcomes of their decisions. Such an investment of time will ultimately generate a greater sense of control over men's life choices and a greater degree of normalcy in their lives.
