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

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 redefining the meaning of prostate cancer.

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 of frustration and regret.

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

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,

Renewing Perspectives on Men's Prostate Cancer

and making decisions about it (Krist et al., 2007).

factors?

expected to face.

Literacy and Engagement Along the Disease Continuum 65

English tend to complain about disrespect and racial discrimination and are thus less likely than Caucasians to advocate for tests and treatments (Elder et al., 2010). Older men with co-morbidities do not extensively seek information on prostate cancer and its treatment, relying more on the technical expertise of health professionals (Nanton et al., 2009). How do health professionals deal with all these simultaneous and synergistic

The second challenge is twofold: first, it concerns the complexity of the health teaching needed for men to become partners in their care; second, it concerns the similarly complex health teaching needed for men to become decision-making partners. A prostate cancer diagnosis may give a man the opportunity to revisit his life priorities and to learn more about health and how to face health threats (Mishel et al., 2002). For this reason, promotion of health literacy goes beyond simple provision of information; instead, men's lived experience must be taken into account to facilitate their discovery of health information within their unique masculine contexts of living, learning, and applying knowledge. Throughout the prostate cancer trajectory, health education will offer men reassurance, knowledge, and understanding about how to balance the changes they are

For prostate cancer screening, Gaster et al. (2010) suggest an "Ask-Tell-Ask" approach that fosters open, interactive dialog between health professionals and men. *Ask* initiates discussion that enables the health professional to explore a man's need for information; *Tell*  provides a patient-focused response by the health professional, tailoring information to the patient's needs; and *Ask* allows for reflection and summation of the dialog. This approach facilitates therapeutic interaction between health professional and patient, actively focusing on the patient's own perspective and situation. It enables the patient to move beyond receiving the information toward understanding, internalizing, reflecting, and ultimately, discovering prostate-cancer-care information as it intertwines with sense of himself as a person. No matter what the presentation tool (simple paper or Web-based decision-making aid), the Ask-Tell-Ask approach engages men in learning about prostate cancer screening

Application of patient-centered care to prostate cancer promotes reciprocation and interactivity, allowing patients to be active partners with health professionals in the delivery of care. The one-way, linear communication in traditional prostate cancer care is less effective in engaging men with their own care (Gaster et al., 2010). Individualized teaching may better satisfy men's knowledge needs. Feldman-Stewart et al. (2009) found that men most often asked questions about treatment: first, because of their need to understand and, second, because of their desire to make decisions and plan. Even if men living with prostate cancer did want a lot of information, the amount of and details of information they asked for varied enormously, due to personal reasons. For example, with recent technological advances in the treatment of prostate cancer, men have the opportunity to consider various treatment options. Open prostatectomy procedures can now be performed by surgeons with success rates similar to those with laparascopic or robot-assisted prostatectomy (Lallas & Trabulsi, 2010). Despite these options, patients' feelings of vulnerability when facing complex information about treatment options can be overpowering. Health professionals ask men with prostate cancer to make life-altering decisions about complex, high-risk treatments they know little about. Men are expected to reduce their experience of prostate cancer to a simple *yes* or *no* consent to treatments. When health professionals focus only on

allied to a humanistic approach. However, to provide services that respond to the specific needs of men, according to the World Health Organization (2002), professionals need to acknowledge gender-specific roles and biological distinctions as well as differences among men in needs, power, access to resources, obstacles, and opportunities. Gender equity is needed in the delivery of health services to overcome the structural oppression that grants women access to a humanist approach in health care relationships, but denies men access to the same humanist approach. Zanchetta et al. (2010), in discussing the role of health and social professionals in supporting men's preventative prostate health behaviors, warn that "men today also define their relationships according to trustworthiness. For this reason, professionals should learn how to build trusting relationships with men, to facilitate a new men's culture of seeking preventive care for diseases that threaten men's self-identity" (p. 266). Although Kelly (2009) found that health professionals acknowledge the need to establish trusting relationships with men and aim to overcome communication barriers with them, men in the same study reported that not being taught to deal with physical changes after undergoing prostate cancer treatment led them to feel betrayed by the health care system.

Prostate cancer can significantly impact every aspect of a man's life. Jonsson et al. (2009) conclude that men with prostate cancer "are placed in a new life situation, against their will" (p. 273). These patients move through their illness experience with feelings of fear and uncertainty. Although scientific advances continue to enhance preventative, screening, diagnosis and treatment options, patients continue to experience the prostate cancer journey as separate silos of care. Patient-centered care is one approach that could reconnect these silos into a care continuum. Patient-centered care, which has gained momentum in the last two decades, is an approach to providing health care in which the patient is the focal point. According to the Picker Institute (2011), the eight guiding principles of professional practice in organizations committed to patient-centered care are (a) respect for patients' values, preferences, and expressed needs, (b) coordination and integration of care, (c) information, communication, and education, (d) physical comfort, (e) emotional support and alleviation of fear and anxiety, (f) involvement of family and friends, (g) continuity and transition, and (h) access to care.

The application of these principles coexists with challenges that professionals may face to satisfactorily implementing patient-centered care to ultimately sustain men's prostate cancer literacy. The first challenge is the unresponsiveness of professional practice to the needs of male patients. Despite the patient centered-care movement, patients are continually *cared for* not *cared with*; for instance, professionals present patients with complex treatment options, seeking yes or no decisions about life-changing, high-risk treatments but allowing little time for men to reflect, learn about, and discuss options. Professionals who provide direct care, such as nurses, are faced with the difficult choice of dividing their time among a complex array of institutional demands. These other priorities ultimately result in less time for teaching their patients about health. Professionals are driven by their technical expertise, leading to the transfer of knowledge from 'expert health care professional' to 'patient'. Is this prevalent practice effective? Does men's motivation to seek care rest on the attainment of 'patient knowledge'? Or does their need to survive underpin all the other tasks that men living with prostate cancer must undergo? Ethnic-minority men are less likely than Caucasians to share health information with care providers that they obtained elsewhere. Those whose first languages are not

allied to a humanistic approach. However, to provide services that respond to the specific needs of men, according to the World Health Organization (2002), professionals need to acknowledge gender-specific roles and biological distinctions as well as differences among men in needs, power, access to resources, obstacles, and opportunities. Gender equity is needed in the delivery of health services to overcome the structural oppression that grants women access to a humanist approach in health care relationships, but denies men access to the same humanist approach. Zanchetta et al. (2010), in discussing the role of health and social professionals in supporting men's preventative prostate health behaviors, warn that "men today also define their relationships according to trustworthiness. For this reason, professionals should learn how to build trusting relationships with men, to facilitate a new men's culture of seeking preventive care for diseases that threaten men's self-identity" (p. 266). Although Kelly (2009) found that health professionals acknowledge the need to establish trusting relationships with men and aim to overcome communication barriers with them, men in the same study reported that not being taught to deal with physical changes after undergoing prostate cancer

Prostate cancer can significantly impact every aspect of a man's life. Jonsson et al. (2009) conclude that men with prostate cancer "are placed in a new life situation, against their will" (p. 273). These patients move through their illness experience with feelings of fear and uncertainty. Although scientific advances continue to enhance preventative, screening, diagnosis and treatment options, patients continue to experience the prostate cancer journey as separate silos of care. Patient-centered care is one approach that could reconnect these silos into a care continuum. Patient-centered care, which has gained momentum in the last two decades, is an approach to providing health care in which the patient is the focal point. According to the Picker Institute (2011), the eight guiding principles of professional practice in organizations committed to patient-centered care are (a) respect for patients' values, preferences, and expressed needs, (b) coordination and integration of care, (c) information, communication, and education, (d) physical comfort, (e) emotional support and alleviation of fear and anxiety, (f) involvement of family and friends, (g) continuity and transition, and

The application of these principles coexists with challenges that professionals may face to satisfactorily implementing patient-centered care to ultimately sustain men's prostate cancer literacy. The first challenge is the unresponsiveness of professional practice to the needs of male patients. Despite the patient centered-care movement, patients are continually *cared for* not *cared with*; for instance, professionals present patients with complex treatment options, seeking yes or no decisions about life-changing, high-risk treatments but allowing little time for men to reflect, learn about, and discuss options. Professionals who provide direct care, such as nurses, are faced with the difficult choice of dividing their time among a complex array of institutional demands. These other priorities ultimately result in less time for teaching their patients about health. Professionals are driven by their technical expertise, leading to the transfer of knowledge from 'expert health care professional' to 'patient'. Is this prevalent practice effective? Does men's motivation to seek care rest on the attainment of 'patient knowledge'? Or does their need to survive underpin all the other tasks that men living with prostate cancer must undergo? Ethnic-minority men are less likely than Caucasians to share health information with care providers that they obtained elsewhere. Those whose first languages are not

treatment led them to feel betrayed by the health care system.

(h) access to care.

English tend to complain about disrespect and racial discrimination and are thus less likely than Caucasians to advocate for tests and treatments (Elder et al., 2010). Older men with co-morbidities do not extensively seek information on prostate cancer and its treatment, relying more on the technical expertise of health professionals (Nanton et al., 2009). How do health professionals deal with all these simultaneous and synergistic factors?

The second challenge is twofold: first, it concerns the complexity of the health teaching needed for men to become partners in their care; second, it concerns the similarly complex health teaching needed for men to become decision-making partners. A prostate cancer diagnosis may give a man the opportunity to revisit his life priorities and to learn more about health and how to face health threats (Mishel et al., 2002). For this reason, promotion of health literacy goes beyond simple provision of information; instead, men's lived experience must be taken into account to facilitate their discovery of health information within their unique masculine contexts of living, learning, and applying knowledge. Throughout the prostate cancer trajectory, health education will offer men reassurance, knowledge, and understanding about how to balance the changes they are expected to face.

For prostate cancer screening, Gaster et al. (2010) suggest an "Ask-Tell-Ask" approach that fosters open, interactive dialog between health professionals and men. *Ask* initiates discussion that enables the health professional to explore a man's need for information; *Tell*  provides a patient-focused response by the health professional, tailoring information to the patient's needs; and *Ask* allows for reflection and summation of the dialog. This approach facilitates therapeutic interaction between health professional and patient, actively focusing on the patient's own perspective and situation. It enables the patient to move beyond receiving the information toward understanding, internalizing, reflecting, and ultimately, discovering prostate-cancer-care information as it intertwines with sense of himself as a person. No matter what the presentation tool (simple paper or Web-based decision-making aid), the Ask-Tell-Ask approach engages men in learning about prostate cancer screening and making decisions about it (Krist et al., 2007).

Application of patient-centered care to prostate cancer promotes reciprocation and interactivity, allowing patients to be active partners with health professionals in the delivery of care. The one-way, linear communication in traditional prostate cancer care is less effective in engaging men with their own care (Gaster et al., 2010). Individualized teaching may better satisfy men's knowledge needs. Feldman-Stewart et al. (2009) found that men most often asked questions about treatment: first, because of their need to understand and, second, because of their desire to make decisions and plan. Even if men living with prostate cancer did want a lot of information, the amount of and details of information they asked for varied enormously, due to personal reasons. For example, with recent technological advances in the treatment of prostate cancer, men have the opportunity to consider various treatment options. Open prostatectomy procedures can now be performed by surgeons with success rates similar to those with laparascopic or robot-assisted prostatectomy (Lallas & Trabulsi, 2010). Despite these options, patients' feelings of vulnerability when facing complex information about treatment options can be overpowering. Health professionals ask men with prostate cancer to make life-altering decisions about complex, high-risk treatments they know little about. Men are expected to reduce their experience of prostate cancer to a simple *yes* or *no* consent to treatments. When health professionals focus only on

Renewing Perspectives on Men's Prostate Cancer

favorable if he considers treatment.

information and utilizing the health care system?

gender-appropriate, sensitive educational tools?

**5.4.2 Reflection questions** 

other than sexuality?

**cancer** 

**5.4.1 Clinical vignettes** 

tell.

Literacy and Engagement Along the Disease Continuum 67

Our aim in the following exercise is to present some insights into the complexity of patient centred care and men's experience of prostate cancer literacy as a survival tool. While reading each clinical vignette, we suggest that readers consider how difficult it is for men to decode medical information in order to make decisions, as well as how challenging it is for

 Juan, a 49-year-old elementary school teacher, comes into the clinic for a follow-up appointment with his urologist/oncologist after undergoing a prostatectomy and radiation therapy. He has been having his PSA level monitored regularly since he was diagnosed and underwent surgery and treatment. Juan's doctor tells him that his PSA level remains unchanged following radiation therapy and that they will continue to monitor it over time. Juan is not satisfied with this report and wants the doctor to tell him conclusively whether his cancer is cured. The doctor responds that time will

 Hassan, a 55-year-old car salesman, is diagnosed with prostate cancer. His urologist discusses possible treatment options, including surgery and radiation. Hassan was recently remarried, to a much younger woman, and explains that their sex life is quite active. They have been discussing the possibility of having a baby. Hassan is concerned that prostate-cancer treatment could lead to erectile dysfunction, which could end his happy, active sex life. He is unwilling to take a chance that his sex life will be affected

 Roberto, a 45 year-old Crown attorney, receives a diagnosis of prostate cancer. He is devastated. His father died of advanced prostate cancer at the age of 55. Roberto reports that he has a strong faith in God and that he plans on praying for a miracle. He refuses any and all treatment that is offered to him, because he believes that, through prayer, he will be healed. Roberto's physician attempts to convince him that, if he refuses treatment, he risks the same outcome as his father. The physician tells Roberto that, because he is a young man and the cancer was detected early, the outcome could be

What factors contribute to men's difficulty in understanding prostate cancer

 What impact can men's experience of prostate cancer have on significant others, and how can that impact be attenuated by new professional attitudes and practices? What changes in professional practice relating to prostate cancer literary will

How could education, social, and health professionals collaborate to develop age- and

How do you foresee education about prostate cancer focusing on aspects of men's lives

acknowledge the importance of different perceptions of masculinity?

and that he could jeopardize his chance of having a baby with his new wife.

**5.4 Reflecting on the complexity of patient-centred care and survival in prostate** 

professionals to promote men's health and prostate-cancer literacy.

outcomes of the procedures, they leave behind the process by which the outcomes are achieved. In contrast, men not only focus on the outcomes of care, but more important to them, the process of care (Jayadevappa et al., 2010). The way that health professionals deliver prostate cancer care can significantly influence men's active engagement in their care (Martinez et al., 2009). Knowledge of disease progression and response to treatments is key for men living with advanced or recurrent prostate cancer, because they need instrumental knowledge to deal with uncertainty about how long their bodies will be able to respond to therapies (Nanton et al., 2009).

Being a partner in care means being a decision maker. Stacey et al. (2010) report that men want more opportunity to decide than they are allowed. Their vehemence remains unchanged if they are not offered decision aids or the opportunity to discuss the details of treatment with health professionals. This vehemence applies equally to the informed consent process, which usually requires more in-depth information and clearer explanations to support men's understanding. Moreover, men want more information on potential harms of therapies, since health professionals tend to present more often the benefits. As discussed in Section 5.2, men's partners should be considered in the process of decision-making. To include men's partners, Illingworth et al. (2010) propose that health professionals talk to men about their significant others and all spheres of their lives. These authors emphasize the central role of men's interpersonal relationships in their experiences with prostate cancer.

Finally, the last challenge for professionals relates to collaboration within their own professions and with other health and social professions. It is known that limited professional links between family physicians and urologists erect structural barriers for health care delivery to older men (Greene & Adelman, 2003). It is beyond the scope of this section to suggest that other members of multidisciplinary cancer-care teams change their practice, due to ethical principles. However, we would like to highlight that Zanchetta (2004), at the time an oncology nurse interested in health literacy, made some recommendations to nurses to counteract misconceptions about older men's health literacy. These recommendations may inspire other professionals. Aiming to awake and enhance nurses' awareness of their opportunity, and responsibility, to expand professional knowledge about men's health literacy, Zanchetta (2004) recommended that nurses (a) be aware that functional health literacy is a result of a broad, socially constructed process, rather than a set of abilities comprising reading, counting, and recognition of words, (b) be particularly attentive to the nature and extension of individual men's social networks, (c) encourage men to collaborate with nurses in creating educational materials, (d) invite physicians to co-create educational materials that respond to knowledge gaps and misunderstandings about prostate cancer, (e) redesign, with men, innovative strategies to communicate others' experiences with cancer, and (f) record their clinical observations of the differences among men's information behaviors.

Enhancing the quality of prostate cancer care involves more than advances in science and technology. It requires engaging patients in treatment-related decisions and fostering a health care environment that facilitates health literacy among patients. The patient-centered care approach enables health care professionals to focus on patients as well as their significant others, as they journey through the prostate cancer trajectory. Engaging patients through patient-centered care allows their collaboration with health care professionals to fulfil the goal of *caring with the patient*.
