P r o s t a t e C a n c e r a n d Psychosocial C o n c e r n s in African American M e n : Literature Synthesis and Recommendations
Robert Pierce, Letha A. Chadiha, Amy Vargas, and Muriel Mosley African American men have the highest prostate cancer rates in the world, and more die from the disease than men from other racial or ethnic groups. Because the social work literature has little information on prostate cancer in African American men, the authors have synthesized the literature on prostate cancer and psychosocial concerns in African American men. They used the Health Belief Model as a framework to help explain, understand, and predict African American men’s preventive health-related behaviors. The authors make recommendations for social work practice and research.
Key words African American men Health Belief Model prostate cancer African American men have the highest prostate cancer rates in the world, and more die from the disease than men from other racial or ethnic groups (Parker, Johnston Davis, Wingo, Ries, & Heath, 1998). Data from the National Cancer Institute’s Surveillance, Epidemiology and End Results Project show that African American prostate cancer patients have higher age-adjusted incidence and mortality rates than white, Hispanic, and Asian and Pacific Islander patients with the disease (Wingo, Ries, Rosenberg, Miller, & Edwards, 1998). Moreover, between 1990 and 1995 the age-adjusted (to the 1970 U.S. standard 100,000 population) incidence of prostate cancer among these groups was 220.3 for African Americans 153.5 for white men, 106.7 for Hispanics, and 91.3 for Asian and Pacific Islanders.
Mortality rates from prostate cancer for the same five-year period per 100,000 population were 66.0 for African Americans, 24.1 for white men, 16.6 for Hispanics, and 11.1 for Asian and Pacific Islanders (Wingo et al., 1998). Despite improvements in diagnosis and treatment, these data indicate that African Americans have yet to realize noticeable gains in prostate cancer survival (Clayton & Byrd, 1993). The observed racial disparity and the psychosocial concerns of African American prostate cancer patients are addressed in literature on cancer screening, prevention, risk factors, knowledge, beliefs, barriers, and facilitators to cancer screening (Abbott, Taylor, & Barber, 1998; Chodak, 1996; Demark- Wahnefried et al., 1995; Myers, Wolf, Balshem, Ross, & Chodak, 1994; Myers et al., 1996; Ndubuisi, Kofie, Andoh, & Schwartz, 1995; Weinrich, 1998). Given their greater susceptibility and the disproportionate burden that prostate cancer places on African American men and their families, why is so little heard from social workers about the psychosocial concerns of these men and their families?
Like all men with prostate cancer, African Americans also agonize over the physical and emotional effects of the disease. Other psychosocial concerns African 303 Prostate Cancer and Psychosocial Concerns in African American Men Americans must contend with include background characteristics (for example, race, location, socioeconomic status, family history, and medical history), attitudes and beliefs about cancer (for example, risk, severity, screening and testing, and treatment), social support from family and church, family caregiving issues, religious coping, motivations for engaging in preventive health behavior, acquisition of and exposure to educational and informational programs, and help-seeking behaviors (Myers, 1999; Myers et al., 1994, 1996; Plowden, 1999; Sharp, 1993). Although prostate cancer is a serious threat to them, African American men are highly underrepresented in clinical trials. Robinson, Ashley, and Haynes (1996), in a focus group study of African American men, found them less willing to participate in clinical trials when they were of lower socioeconomic background and distrusted the medical establishment. On the other hand, if they knew a professional, such as a doctor or researcher, who was deemed competent and compassionate and referred men to participate, then the men were more willing to participate in clinical trials. Social workers in health care settings are in an ideal position to communicate the facts about prostate cancer and psychosocial concerns and pursue a more active role in designing and implementing effective interventions for African American men. The purpose of this article is to increase understanding of prostate cancer and the accompanying psychosocial concerns of African American men. We reviewed and synthesized literature on prostate cancer and psychosocial concerns in African American men.
We present an overview of the Health Belief Model and prostate cancer literature supporting the model. Health Belief Model The Health Belief Model (HBM; Rosenstock, 1960) provides a useful theoretical framework for understanding and predicting the health-related behaviors of African Americans with prostate cancer (Myers, 1999; Plowden, 1999). An underlying assumption of the HBM is that understanding an individual’s motivation to engage or not engage in certain health-related behaviors will help determine the individual’s pattern of preventive health practices (Rosenstock; Strecher & Rosenstock, 1997). Five dimensions of the HBM can help explain what motivates African Americans with prostate cancer to engage or not engage in health-related behaviors (Plowden): (1) perceived susceptibility (that is, the person’s beliefs and attitudes about contracting the illness); (2) perceived severity (that is, the person’s assessment of the seriousness of having the illness or not having treatment for the illness); (3) perceived benefits (that is, the person’s assessment of the positive outcomes of seeking treatment for the illness); (4) perceived barriers (that is, factors that impede a person’s motivation to engage in health-related practices); and (5) prompts to take action (that is, internal and external triggers that stimulate an individual to change his or her behavior for more positive outcomes.
A number of researchers consider the HBM the most influential and empirically based theory of motivation for understanding health-related behaviors (Damrosch, 1991; Myers, 1999; Plowden, 1999). However, some claim the original model is limited for addressing such psychosocial concerns as attitudes and beliefs about illness, economic and cultural factors, and the role of the social network of family and peers in illness or disease (Damrosch). Addressing these issues is important in achieving a fuller understanding of African American men’s health-related behaviors. Even with limitations the HBM is a useful framework for understanding motivations, global attitudes, and beliefs underlying a person’s health-related behaviors. Studies that address psychosocial concerns, such as the attitudes, beliefs, social support, coping, and psychological distress for African American prostate cancer patients, help to overcome the weakness of the original HBM (Germino et al., 1998; Myers et al., 1994, 1996; Tingen, Weinrich, Heydt, Boyd, & Weinrich, 1998; Underwood, 1991). Literature Relating To HBM Model The discussion in this article builds and expands on work by Plowden (1999) on the HBM, integrating psychosocial literature on African American prostate cancer patients with theoretical and empirical literature on the HBM. This integration of literature can yield greater insights into prostate cancer and accompanying psychosocial concerns in African American men.
Perceived Susceptibility
Perceived susceptibility is the individual’s attitudes and beliefs about the risk of acquiring an illness or disease (Rosenstock, 1960). With regard to psychosocial concerns in African American prostate 304 Health & Social Work / Volume 28, Number 4 / November 2003 cancer patients, background and lifestyle factors such as age, race and ethnicity, family history, and diet are known risk factors (Plowden, 1999). Being an African American man below 50 with a family history of prostate cancer and eating food high in fat content are other risk factors for prostate cancer (American Cancer Society, 1998; Demark- Wahnefried et al., 1995; Powell, Gelfand, Parzuchowski, Heilbrun, & Franklin, 1995). Although men over age 60 are more likely to be diagnosed with prostate cancer than men under age 60, African Americans are more likely to be diagnosed at a much younger age than men from other racial and ethnic groups (Wingo et al., 1998). Even controlling for socioeconomic status, African American men are at greater risk of being diagnosed at a much earlier age and with late or more advanced stages of prostate cancer than non–African American men (Parker et al., 1998).
Abrams and colleagues (1990) suggested that the age or developmental stage of the person at diagnosis may be the single most important psychosocial determinant in how a person reacts to cancer. For example, the emotional responses of a younger man with a family and young children to prostate cancer may be quite different from those of an elderly man with a family and adult children. Being an African American man below 50 with a family history of prostate cancer and eating food high in fat content are other risk factors for prostate cancer. Early detection and prompt treatment are essential to controlling prostate cancer (Robinson et al., 1996). Literature on early cancer detection and risk reduction suggests that increasing knowledge and awareness about prostate cancer is essential to reducing cancer risk in African American men (Smith, DeHaven, Grundig, & Wilson, 1997). Smith and colleagues studied 556 African American men over age 40 and found that they had limited knowledge about risk factors for prostate cancer. Only 42.2 percent knew that family history was a cancer risk factor; only 30 percent knew that race was a risk factor. If a family member had cancer and men had a regular doctor, they were more knowledgeable about prostate cancer risks. If men reported low education and low incomes, they were less knowledgeable about prostate cancer risks. Other studies support findings about risk factors and knowledge among African American men with prostate cancer (Myers et al., 1996; Smith et al., 1997). For example, even though African American men perceived the risk of prostate cancer as being high for other same-race men, they tended to rate their personal risk as lower (Myers et al., 1996). Perceived Severity Actions that an individual takes to engage in health related behaviors is influenced by the individual’s perceived seriousness of acquiring an illness or leaving it untreated (Damrosch, 1991; Plowden, 1999; Strecher & Rosenstock, 1997). More specifically, perceived severity is the extent to which an individual evaluates the consequences of having an illness—such as dying or losing his or her ability to function (Strecher & Rosenstock).
Perceptions about cancer severity in African American men are found in early detection literature. In a study of African American (n = 286) and white (n = 1,218) men, Demark-Wahnefried and colleagues (1995) found that African American men were significantly less likely to have had a digital rectal examination or a prostate-specific antigen test. In a study by Smith and colleagues (1997), 58 percent of African American men reported that they felt no need to have a digital rectal examination unless they experienced pain while urinating. Yet, approximately 75 percent of men reported it was important for a man age 40 or older to have a digital rectal examination to identify prostate cancer problems. These findings suggest that African American men may know the risk of prostate cancer for younger men. However, they may not perceive a personal threat of acquiring prostate cancer because of a misunderstanding of its symptomology. Although a large screening study found no significant racial difference between African American and white men in advanced prostate cancer at diagnosis (Smith, Bullock, Catalona, & Herschman, 1996), other studies have shown that African Americans are more likely to be diagnosed with and treated for more advanced prostate cancer than white men (Mebane, Gibbs, & Horm, 1990; Optenberg et al., 1995; Powell, Schwartz, & Hussain, 1995; Targonski, Guinan, & Phillips, 1991).
Moreover, the disparity in presentation with advanced prostate cancer exists for African Americans even when socioeconomic status is controlled (Ndubuisi 305 Prostate Cancer and Psychosocial Concerns in African American Men et al., 1995), and African American men are believed to have equal access to veteran’s health services (Optenberg et al., 1995). The perceived threat of an illness, especially accompanying fears of illness outcome, may spur an individual to seek treatment. However, if a person is not threatened by an illness, then the person is unlikely to be motivated to seek and accept treatment (Damrosch, 1991). African Americans reported more fear of cancer than members of the general population; they may acknowledge the severity of cancer yet be pessimistic about its cure (American Cancer Society, 1998). Literature regarding African American men’s perception about cancer cure conflicts with this more fatalistic perception. For instance, studies with relatively large samples reported that a preponderance of African American men believed that prostate cancer could be cured (Myers, 1999; Smith et al., 1997).
Still, the perceived uncontrollability of cancer is often at the root of pessimism and fatalism for some individuals with cancer and this, in turn, may affect individuals’ psychosocial functioning in an unfavorable way (Christ, 1989). Perceived Benefits Whether an individual is motivated to engage in health-related actions is determined by an individual’s perceptions of outcomes (Rosenstock, 1960). An African American man’s perceptions about the saliency and efficacy of an early detection examination help inform his perceptions about benefits. Among 218 African American men in a study by Myers and colleagues (1996), more than one-half (59 percent) perceived an early detection examination to be an effective health behavior for preventing cancer. In this same study, results of multivariate analyses indicated that perceived efficacy of an early detection examination and support from a physician significantly predicted an African American man’s intention to undergo early detection examination. Tingen and colleagues (1998) found that a measure of perceived benefits (that is, the personal beliefs about the usefulness of prostate cancer screening and early detection) was a significant predictor of a man’s participation in prostate cancer screening when controlling for race, education, marital status, and receiving an educational intervention.
Although African American and white men reported similarly on the perceived benefits measure, African American men were significantly less likely to participate in screening. These findings are instructive in considering ways to increase African American men’s participation in early detection examination. Plowden (1999) noted that if a person perceived no benefit from cancer screening or treatment, then he was unlikely to participate in such health-related behaviors. Damrosch (1991) stated that it is essential for the person seeking care to know that perceived positive outcomes are “both feasible and efficacious” (p. 834). To the extent that African American men perceive an early detection examination and cancer treatment as feasible and efficacious, these men may lower their risk of presenting with a more advanced stage of cancer. They are also likely to reduce their risk of dying from cancer. Findings in a study by Tingen and colleagues suggest a warning about perceived benefits and participation in screening for African American men: Men may perceive both benefits and barriers to screening. These researchers suggested that an examination of perceived benefits and barriers in future studies involving African American men could help clarify their perceptions of benefits. Perceived Barriers According to the HBM, perceived barriers to seeking care are factors that hinder a person from engaging in health-seeking behaviors (Rosenstock, 1960).
Barriers may operate from within or outside the individuals (Plowden, 1999). One way in which a barrier operates from within individuals can be seen through the perceptions they hold about illness and disease. With regard to African American men and prostate cancer, findings in a national cancer study of U.S. men illuminate how their own perceptions may be a barrier to early prostate cancer detection (Gallup Organization Healthcare Group, 1995). African American men were 8 percent (n = 95) of 1,193 men ranging in age from 45 to 75 years in this national study. Fifty percent of all African American men in this national study were least likely to feel men should have annual rectal exams to determine the prostate size; a corresponding percentage of African American men viewed the cancer test as embarrassing and painful. All men in the study responded that the possibility of wearing diapers and becoming impotent would affect their decision to seek an early diagnosis of cancer, but these issues were of greater concern to African American and Hispanic men than to white men.
Other studies document similar concerns about incontinence and impotence among African 306 Health & Social Work / Volume 28, Number 4 / November 2003 American men (Coley, Barry, & Mulley, 1997; Myers et al., 1996). Cultural values may help explain these concerns. Plowden (1999) asserted that many men value their sexuality and independence and that, for a large proportion, their masculinity and sexuality are closely linked. Franklin (1992) noted that being in control of a situation is a key symbol of manliness in African American male culture. An African American man’s more negative perceptions about pain and embarrassment, as well as possible incontinence and impotence in prostate cancer treatment, may have been shaped largely through the culture of masculinity and oppression in U.S. society. These men may bear witness indirectly and directly to the history of oppression in U.S. society in which African American men have been violated in terms of their sexual organs. Regardless of the origins of these men’s perceptions, their negative perceptions about an annual rectal exam, pain and embarrassment associated with the exam, wearing diapers, and impotence may hinder their participation in cancer screening. Lacking cancer screening, African American men may be less likely to have their cancer detected early and likely to increase their risk of dying from cancer. Religion may serve as both a barrier and a coping resource in African Americans with prostate cancer. Geertz (1973) defined religion as “a system of symbols which acts to establish powerful, pervasive, and long-lasting moods and motivations in men
[sic] by formulating conceptions of a general order of existence and clothing these conceptions with such an aura of factuality that the moods and motivations seem uniquely realistic” (p. 90). Underwood (1991) found that African American men perceived their cancer as the will of God. Potts (1996) found that African American cancer patients often looked to “God as the source of healing and recovery from cancer” (p. 9). Moreover, cancer patients used prayer to cope with cancer (Potts). Pierce (1999), in a case study of a man with prostate cancer, learned that the man found strength to cope with his cancer through support from family— his mother “prayed on it” and reminded him that God would see him through the illness. Plowden (1999) and others (Strawbridge, Cohen, Shema, & Kaplan, 1997) highlighted the salutary effect of religion on health behavior in African Americans. For example, a study found that frequent church attendees had lower mortality rates than infrequent church attendees (Strawbridge et al.). African Americans were more likely than non– African Americans to attend church frequently. A sparse literature exists on religion and prostate cancer, thus making it difficult to reach firm conclusion about this topic for African American men. Nonetheless, this literature stresses the importance of religion in helping these men make sense of their illness. Research suggests that men’s socioeconomic status may serve as a barrier to seeking care. African American men with less than a high school education ranked highest among men most likely to postpone or avoid testing and screening because of lack of insurance or health care plans (Gallup Organization Healthcare Group, 1995). Early cancer detection and intervention with these men to deal with their cancer are hampered when they lack access to medical care (Plowden, 1999). Although studies are fairly consistent in reporting a higher incidence and mortality rate resulting from prostate cancer in African Americans, studies are mixed about the role of socioeconomic status in their survival (Optenberg et al., 1995; Powell, Schwartz, et al., 1995; Robbins, Whittemore, & Thom, 2000). Robbins and colleagues noted that a lower survival rate in relatively younger African American men (those under age 65) diagnosed with prostate cancer may have multiple reasons, including detection of a more virulent prostate tumor, an inaccurate measure of socioeconomic status, unmeasured factors such as social support, and residual confounding of socioeconomic status and treatment. Noneconomic barriers such as race and location may explain the poorer survival of African Americans with prostate cancer. According to Friedman (1994), African Americans experience racial discrimination in obtaining health care because of skin color. They also reside in low-income urban areas that lack adequate health care services. Prompts to Action Plowden (1999) noted that having a perceived susceptibility to prostate cancer, knowing the severity associated with it, and knowing the benefits of early treatment are necessary, but not sufficient, motivators for an individual to engage in preventive health behavior. Equally important, “an individual has to have the perceived ability to seek care” (Plowden, p. 5). An underlying assumption of the HBM in emphasizing readiness to take action is that a person must be prompted to act. Both internal prompts (for example, symptoms) and external prompts (for example, knowledge and 307 Prostate Cancer and Psychosocial Concerns in African American Men information about illness and disease) may motivate a person to seek care (Plowden). There is compelling evidence that significant others, such as peers and professionals, can be effective prompts to action for an African American man’s participation in cancer screening. A study by Tingen and colleagues (1998) showed that an educational intervention including a peer educator and social worker to help men navigate the health system was a more effective motivator for their screening participation than either educational information or a peer educator’s personal testimony. Institutions such as churches, barbershops, taverns, and fraternal organizations may also serve as a source of help to African Americans with prostate cancer. Help seeking is a key variable in cancer management and rehabilitation. All human societies practice some form of help seeking and health maintenance that govern decisions about illness identification, treatment, and management (Landrine & Klonoff, 1992; Sussman, 1996). Individuals learn practices of help seeking and illness management through their family, culture, and society. The literature has long emphasized the role of the informal help system in cancer patients’ psychosocial functioning. Wortman and Dunkel- Schetter (1979) asserted that an informal support system—the social network of family, friends, and even other cancer patients—is essential to the cancer patient’s illness management and rehabilitation. Sussman (1996) noted that an illness may lead not only to a medical crisis but also to a social and psychological crisis among a network of people— patient, family, friends, and community. Members of the cancer patient’s informal network play a critical role in helping the person clarify and manage an illness through the use of existing cultural beliefs, norms, and values. Literature documents African Americans’ heavy reliance on the informal network of family, friends, and neighbors. Such a support system provides African Americans who are experiencing crisis with tangible and intangible sources of help (Neighbors, 1985; Neighbors & Taylor, 1985). Regarding African American prostate cancer patients, Myers et al. (1996) found that support received from family was significantly associated with a man’s intention to seek cancer screening and health advice from professionals. Although we found no literature on the social support that African Americans with prostate cancer receive from friends, a work by Franklin (1999) illuminates the structuring of friendship relationships in African American men. According to Franklin, friendship structures among African American men may vary within race and across class. For example, same-sex friendships among working-class African American men tend to be warm and intimate. The converse would be true for same-sex friendships among upwardly mobile African American men. Institutions such as churches, barbershops, taverns, and fraternal organizations may also serve as a source of help to African Americans with prostate cancer (Lee, 1999). Powell, Gelfand, and colleagues (1995) found the church and ministers to be a motivating factor in the recruitment and participation of African American men in an early detection prostate cancer educational program. For instance, ministers of local churches played a critical role in gaining the trust and participation of men in a cancer educational program. Churches may also function as a quasi-family to African Americans with prostate cancer (Pierce, 1999). According to Lum (2000), “for African Americans, the church is intricately involved in personal, family, and social needs” of community residents (p. 301). The help a cancer patient receives from an informal support system may facilitate illness clarification, validation, and management (Goldberg & Cullen, 1985; Wortman & Dunkel-Schetter, 1979), but seeking help from others during the illness has costs as well as benefits. Neighbors (1997), in a national study of African Americans, documented that spouses, kin, and friends were a source of stress and a source of support. Also, African American prostate cancer patients may receive severe criticism from a loved one or friend about hesitating to comply with a recommended medical intervention or course of therapy (for example, chemotherapy). However, the benefits of seeking help from others may outweigh the costs. Literature indicates that African Americans with prostate cancer value the support of family and professionals in seeking early detection examination or 308 Health & Social Work / Volume 28, Number 4 / November 2003 participating in clinical trials (Myers et al., 1996; Robinson et al., 1996). Recommendations Practice An underlying assumption of the HBM is that understanding an individual’s motivation to engage or not engage in certain health-related behaviors helps determine that individual’s pattern of preventive health practices. Social workers can help motivate African American men with prostate cancer to engage in positive health-related behaviors by understanding and appreciating the factors that hinder or promote such behaviors (Sharp, 1993). Social workers can motivate African American men to participate in prostate cancer screening by providing educational information and making timely personal follow-up telephone calls (Tingen et al., 1998). From a social work perspective, maximizing health care services to African American prostate cancer patients requires that social workers acknowledge the vital roles they play (for example, teacher, enabler, mediator, broker, planner, and advocate) in the lives of these men and their families. Regardless of social workers’ roles, they should consider the facts about African American prostate cancer patients when “judging and deciding what is good and what is bad” about their health beliefs and behaviors (Julia, 1996, p. 4). Perhaps the most important roles for social workers are those of educator and active listener. As active listeners, social workers suspend personal views about how people should believe and behave when ill. Rather, social workers become enablers and encourage people to talk about their health beliefs and behaviors—a process that benefits both client and social worker. For many African American men, their encounter with the social worker may be the first opportunity to share fears and concerns about prostate cancer. For social workers, this sharing process becomes an opportunity to understand an African American man’s distrust and fear of medical systems, their lack of knowledge ab