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Article first published online: 21 JAN 2004
Copyright © 2004 American Cancer Society
Volume 100, Issue 5, pages 1017–1025, 1 March 2004
How to Cite
Woods, V. D., Montgomery, S. B. and Herring, R. P. (2004), Recruiting Black/African American men for research on prostate cancer prevention. Cancer, 100: 1017–1025. doi: 10.1002/cncr.20029
The opinions expressed herein are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control or the Association of Schools of Public Health.
The terms “Blacks” and “African American” have been used interchangeably because many individuals still refer to themselves in this manner.
- Issue published online: 18 FEB 2004
- Article first published online: 21 JAN 2004
- Manuscript Accepted: 18 NOV 2003
- Manuscript Revised: 7 NOV 2003
- Manuscript Received: 2 JUL 2003
- Centers for Disease Control and Prevention (Atlanta, GA)
- Association of Schools of Public Health. Grant Number: U36/CCU300430-22
- black men;
- African American men;
- prostate cancer prevention;
- Afrocentric prevention research
Black/African American men die of prostate cancer at a greater rate relative to other males. During the period from 1992 to 1998, prostate cancer incidence rates in the United States were 234.2 per 100,000 persons among non-Hispanic black males and 144.6 per 100,000 persons among white males. The reasons for these increased rates of prostate cancer among black males are largely unknown, but increased mortality is associated with late detection. The authors conducted a longitudinal study of black men that investigated prostate cancer prevention behaviors within this population. The purpose of the current article is to identify successful recruitment strategies that were reported by participants in this study of prevention behaviors.
Qualitative research methods were used to elucidate men's thoughts, attitudes, beliefs, and practices regarding prostate cancer prevention behaviors and to identify strategies for attracting black men to research programs and retaining them in these programs.
Ethnocentric recruitment strategies that were identified included the development of tailored printed materials; the use of targeted locations; and a personalized, participatory approach for engaging potential participants. We contacted 498 black men and enrolled a cohort of 277 non-Hispanic black males (75% of whom were recruited within a 9-week period) in the current study.
Unlike other studies that reported difficulty in recruiting African American men, the current study did not encounter such difficulties. The authors attribute their success to culturally attractive Afrocentric materials; cultural sensitivity; a caring, professional, personalized ethnic approach; respect; and participatory involvement of the target population. Nonetheless, the authors did encounter barriers, such as lack of physician interest and lack of trust in quality medical care. These barriers must be overcome before black males can be engaged and retained in research studies on prostate cancer prevention. Cancer 2004;100:1017–25. © 2004 American Cancer Society.
Prostate cancer is the second most common malignancy diagnosed among men in the United States. Although death rates have decreased across all age and ethnic/racial groups, African American men continue to have the highest rate of prostate cancer incidence (180.6 per 100,000 persons) in the world.1, 2 Between 1990 and 1998 in the United States, the age-adjusted incidence of prostate cancer among non-Hispanic black males (53.5 per 100,000 persons) was more than double the corresponding rate among white males (22.8 per 100,000 persons).3
In California, the 1999 age-adjusted prostate cancer mortality rate for black males (93.7 per 100,000 persons) was nearly three times greater than the rate for white males (32.6 per 100,000 persons).4 It is not clear why these differences persist, but higher death rates are associated with late detection. A major concern with respect to late detection is the lack of clarity and consensus among medical and professional groups regarding recommended screening and early detection guidelines.5–9
Late detection of prostate cancer is directly linked to nonparticipation in early detection activities and screening.8 Accessing healthcare at a relatively late stage (i.e., being reluctant to visit doctors, accessing healthcare only when pain is no longer bearable, and using emergency services as a portal to healthcare) is an acknowledged health-seeking behavior of the black male; this also has been referred to as the black male health behavior phenomenon.10 Consequently, black males have a higher risk of nonparticipation in prostate cancer prevention, because they are less likely than other individuals are to engage in preventive and self-care practices.10 The lack of participation in all forms of research limits our understanding of this black male health behavior phenomenon.
According to the National Institutes of Health (NIH), minorities continue to be underrepresented in research. NIH data on enrollment in extramural research in 2000 demonstrated that male and female non-Hispanic blacks were similar to other minorities in terms of low participation rates (African Americans, 11.3%; Hispanic Americans, 7.9%; Asian Americans, 11.4%; Native Americans, 0.9%) compared with male and female non-Hispanic whites (62.4%);11 over the same time period, the rate of participation for non-Hispanic black males was only 4.5%. The syphilis experiments conducted at Tuskegee, Alabama, have left a legacy of distrust and profound fear of participating in research for blacks.12–15 Distrust and fear also are reported by black men to be significant barriers to engagement in the healthcare system (unpublished data).
Most research on prostate cancer in non-Hispanic black males focuses on treatment, clinical trials, early detection, and screening.8, 13, 16–22 Efforts to recruit black males into clinical trials for prostate cancer and to retain them in these trials have been extremely unsuccessful. Yancey23 proposed that strategies for engaging African Americans in research studies have involved insufficient efforts, been inappropriately applied, and lacked a culturally competent approach.
In examining the effectiveness of recruitment strategies targeting older African American adults, Coleman et al.16 noted that older, ethnically diverse adults from lower-income groups were less likely to participate in health interventions. Other factors that were found to inhibit participation in community-based health interventions included negative past experiences (manifested in fear of exploitation, for example), skepticism, suspicion, family responsibilities, inadequate transportation, and involvement in other community activities. Royal et al.20 attributed the lack of participation in prostate cancer prevention activities to economic limitations, low levels of education, poor access to healthcare, lack of awareness regarding studies, past negative experiences, physicians' attitudes, cultural and religious beliefs and attitudes, and fear of sexual dysfunction. In their report on the recruitment of blacks into a longitudinal, church-based research study, Herring et al.24 reported findings similar to those made by other investigators. Furthermore, Herring et al. discovered that blacks perceived informed consent as a ‘signing away’ of their rights (rather than a method for protecting them) and that they sensed a lack of benefit from participating in research studies.
Researchers observed that African American men are more likely to be recruited into health activities if they are encouraged by their physicians.13, 17, 19, 22, 25, 26 In their investigation of the impact of socioeconomic status (SES), Ford and Havstad27 found that SES was not a factor in the challenges associated with recruiting black men, a finding that was reflected in the recent report by the Institute of Medicine.28 Common explanations that were given for the unsuccessful recruitment of black men into prostate cancer screening included patients' perception that screening was not important, effective, or convenient; patients' lack of awareness regarding risk; patients' aversion to the rectal exam; and failure of the physician to inform patients that prostate testing was necessary.29 Nivens et al.30 investigated cues to participation in research on prostate cancer prevention and discovered that recruitment of screening participants was more effective when men were adequately exposed to information regarding prostate cancer and when they had greater knowledge of their individual risk status.
Barber et al.31 investigated the differences between black men and white men in terms of participation in prostate cancer screening and found that black men were twice as likely as white men to choose private appointments over mass screening. These differences are illustrative and must be investigated further so that factors affecting participation in health-seeking behaviors can be better understood and so that viable solutions to the problem of nonparticipation in prostate cancer prevention studies and other prevention activities can be determined.32, 33 A trusted provider influences individual health behaviors in positive ways. Trust remains a singular cultural determinant with respect to the engagement of African Americans in health prevention activities.24, 34, 35
In an effort to better understand the prostate cancer prevention behaviors of African American men and to elicit effective ways to reach these men and engage them, Woods et al. developed and conducted the ‘It’s All About U: Prostate Health Promotion' project, a 3-year longitudinal study (unpublished data). The purpose of the study was to explore how culture and communication with healthcare providers influenced knowledge, health beliefs, and practices with regard to prostate cancer prevention. The current article describes how qualitative research methods were effective in the development of successful ethnocentric strategies for recruiting non-Hispanic black males into the ‘It’s All About U' study and retaining them once they had been recruited.
MATERIALS AND METHODS
The current study was conducted in San Bernardino county in the eastern part of Southern California. The population of the county was 1.8 million, with an ethnic/racial composition that included non-Hispanic whites (44.0%), Hispanic Americans (39.2%), and non-Hispanic blacks (8.8%).36 Geographic information systems (GIS) analysis indicated that 10% of black men were densely concentrated within a 20-mile radius, predominately in 3 areas. To reach our target population, we collaborated with three major health systems in these areas, as well as with a university-associated private medical center, a large regional county medical center, a Veterans' Administration medical facility, the American Cancer Society (Atlanta, GA), and 100 Black Men of America, Inc. (Atlanta, GA).
Patient Selection and Collection of Data
Patients selected for the current study were non-Hispanic African American males age ≥ 40 years who had not been diagnosed with prostate cancer and who displayed no evidence of mental illness. In preparation for the current study, we used a mixed-methods research approach37 to collect qualitative data on 15 black men in the target age range, 7 physicians, and 2 nurses. Two focus groups (n = 22) involving men from the targeted population, along with health center staff meetings, were conducted to further validate our key informant findings. We developed a key informant guide on barriers to participating in prostate cancer screening and early detection programs. In this phase, we focused predominantly on the research question of what ethnocentric strategies are most effective in recruiting asymptomatic black men age ≥ 40 years to participate in research on prostate cancer prevention and retaining these men once they have been recruited. We primarily investigated issues involving recruitment, retention, barriers to participation, knowledge, quality care, and physician-patient communication regarding prostate cancer prevention. The current study was approved by the internal review board at our institution. To ensure their protection, participants provided informed consent before interviews were conducted. All interviews were confidential. Each interview was conducted at a convenient location chosen by the participant (e.g., home, clinic, workplace) and was recorded on audiotape.
Audiotaped interviews were transcribed verbatim. The final data set consisted of 26 transcripts of key informant interviews and focus groups, along with field notes. We used grounded theory methods38, 39 to code data and identify and context-analyze emergent themes regarding recruitment strategies. In brief, grounded theory deals with the systematic gathering and analysis of data to obtain insight, understanding, and a meaningful guide for identifying what represents ‘reality’ for the population being studied. This process allows a theory regarding the study population to emerge from the collected data. Four specific themes that emerged from our data on recruitment and participation in health activities were access, knowledge, communication, and quality.
Black men were reluctant to visit a physician. Visiting a physician was associated with experiencing some type of symptom or pain, and visits generally were initiated only when they were absolutely necessary. This lack of preventive use of medical services indicated that due to pressing health problems and pain, the target population would not necessarily be approachable in the setting of the physician's office. In fact, only 3.8% of participants in the current study were recruited at a physician's office.
I don't see any reason to go [to the doctor] if I'm not hurting. —Male participant, Community Focus Group #1
Our respondents chose to access care (when necessary) primarily in the setting of the hospital-based public clinic, despite respondents' ability to afford the costs of care at other institutions. (Respondents had insurance coverage and means of transportation, issues that were thought to be major barriers to access.) Men in the current study stated that while they were at these clinics, they rarely were encouraged to participate in prevention actions. Despite our outreach to other settings, we recruited 41.1% of the participants in the current study from the county clinic healthcare system, primarily because most men chose to seek care from public clinics.
I've seen a family physician most of the time…and I've had health insurance forever. No one's talked to me about prostate cancer…Well, the first I heard about prostate cancer was when we talked about it today. —Black male key informant, age 58 years
Men told us that in general, the healthcare system that is available to them is viewed as a barrier to accessing health services. One only seeks services if they are absolutely necessary. When the system is not responsive to the needs of black males, it creates constant stress. Consequently, respondents felt disconnected from the healthcare system. Aside from the perceived stressors that these men reported encountering in everyday life, disconnection from the healthcare system and the system's disregard for personal preferences led to additional stress and avoidance behavior.
We have a system here where black males and/or minorities have a little more stress in their lives than, say, the average white male. —Male participant, Community Focus Group #2
Male participants informed us that they were not comfortable accessing prevention services in public settings (e.g., health fairs). They preferred to receive screening examinations on a one-on-one basis with a trusted physician with whom they felt comfortable. They felt that the topic (i.e., prostate cancer) was a private one that most black men preferred not to think about unless the issue was raised by a physician.
We black people think that it is taboo to talk about it [prostate cancer]…because we don't want to hear nothing bad…I'm not going to ask about it because I might invoke it, like you are going to bring it on yourself. —Black male participant, Masonic Lodge Focus Group, age 45 years
Health messages must feature black men and reflect Afrocentric perspectives to be appealing and motivational. Health communications must be readily understandable. Information must be framed to reach out, attract the attention of black males, and carry a strong call to action. Health communications should be meaningful; demonstrate caring for, commitment to, and appreciation of the target population's culture; and portray the target population's culture in a positive light.
A lot of men wouldn't go because, number one, they feel like no one is going to care…The receptionist, the nurses, the doctors themselves…You walk into a waiting room [and] you very seldom see anything but Anglo-type magazines and literature in the waiting rooms. The pictures all reflect that. So you are…uncomfortable with that. —Black male key informant, age 54 years
Physician-patient communication also was a major factor in the lack of participation by black males in the healthcare process.
What makes me feel comfortable is when a doctor can explain to me, in terms that I can understand, what it is that he's doing, how he's going to do it, what he expects from me, and what I can expect out of him. —Black male participant, Community Focus Group #2, age 50 years
I have two doctors…My regular doctor is in family practice…He has never discussed prostate cancer with me. —Black male key informant, age 49 years
Respondents felt that when the physician listened, talked to them, took time with them, made eye contact, made a connection, and showed personal interest in them and their healthcare needs, it provided them with an impetus to take action with regard to personal health. It is unfortunate that such care was reported by most to be the exception, rather than the norm.
Lack of knowledge creates fear, which increases the likelihood that an individual will not access information on prevention. Prostate cancer prevention messages must contain basic, simple, easily understood language that is chosen with consideration of African American cultural values and norms. In our focus groups, we observed that older men were respected and trusted and provided a comfort zone in which younger men could become engaged in discussions. We must recognize the reluctance of black males to discuss and learn more about prostate cancer and reach out to them through trusted, older men in the community and through more effective efforts made by personal physicians.
I talked to my brother; he is older than me. I think I was about 53 or 54 at the time. He asked me if I had a prostate test before and I hadn't. So I decided to go to the doctor and I asked them about it. Now I take both tests. —Black male participant, Masonic Lodge Focus Group, age 62 years
Above all, men stated that they wanted a physician or healthcare system that provided them with quality care—in the words of one respondent, “…someone that knew what they [were] doing.” Our respondents defined quality care as a situation in which the physician listened to the black male, asked him to participate in the decision-making process, and took his comments and input seriously. To our respondents, quality had no connection with the diploma on the wall. Instead, it involved the development of an interpersonal relationship between physician and patient. Regarding the issue of cultural sensitivity, we observed that a lack of sensitivity might represent a barrier to access and equality in the delivery of services. Inadequate access, which was equated with having less quality care, generates mistrust of any health information that is shared. Health-related information must be culturally appropriate for it to be considered credible or trustworthy. Distrust of services was a major deterrent to participation in prevention programs.
[It's] a problem…when things happen to us, they [the doctors] really don't understand…African American—blacks—won't go to the doctor because of his [the doctor's] training, or logic, or whatever. —Black male key informant, age 50 years
I think a lot of doctors are not culturally sensitive, and they think that we are not aware as African American men…They [the doctors] say ‘well you don’t necessarily need that.' —Black male key informant, age 54 years
Our initial protocol involved the recruitment of participants from collaborative partner clinics through clinic staff members; however, this protocol proved to be ineffective, and therefore, using input from participants, we modified our approach in the following ways:
- 1We placed study staff interviewers in the partner clinics at different times of the day. Subsequent enrollment increased dramatically
- 2We used volunteer outreach workers to make initial contact with potential participants. This modification was not successful. With recontact delayed by more than 1 day, potential participants were lost. Although we had accurate contact information, we found it difficult to reconnect with potential participants after the initial contact
- 3At the recommendation of the participants, we changed the clinic at which recruitment took place, due to the original recruitment clinic's reputation among black men for being inhospitable. It is noteworthy that clinics located in predominantly African American neighborhoods were not necessarily well received by participants
- 4Research staff members performed one-on-one recruitment at clinics identified by participants. An immediate 100% increase in client contact and enrollment were observed. Within 4 weeks, 93 men were enrolled
- 5Participants referred other men and arranged community group meetings. Recruitment response was exceptional (community groups, 72 new participants; Masonic lodges, 46 new participants; American Legion, 16 new participants; and Elks Lodges, 13 new participants).
A total of 498 men were approached over a 5-month period, and 277 enrolled. Of those who were approached but did not participate, 67 (30.3%) were not eligible, 75 (33.9%) scheduled appointments but did not complete the questionnaire, 31 (14.0%) stated that they were too busy to participate, 28 (12.7%) did not respond to an open written invitation, and only 20 (9.0%) directly refused to participate. The participation rate was 67.4%. Of those who completed the questionnaire, 53.1% were recruited in community settings, whereas 46.9% were recruited in healthcare settings. The majority of participants (75%) were recruited within 9 weeks. The mean participant age was 53 years, and 80.3% of respondents had health coverage. Eighty-six percent of patients were educated beyond the 12th grade. Fifty-one percent had an annual household income < $29,999, nearly 30.0% had an annual income > $50,000, and 49.6% reported having some type of job (Table 1).
|Characteristic||No. of participantsa (%)b|
|Part of an unmarried couple||7 (2.6)|
|<11th grade||39 (14.0)|
|Completed high school||86 (31.0)|
|1–4 yrs of college||114 (41.2)|
|Graduate/professional school||38 (13.7)|
|Annual household income|
|Work situation in last 12 mos|
|Work > 35 hrs per week||104 (38.5)|
|Work < 35 hrs per week||22 (8.1)|
|Type of health coveraged|
|Health maintenance organization||61 (22.0)|
|Veterans' Administration||42 (15.2)|
We developed recruitment strategies that included Afrocentric components: a recruitment protocol, an appealing slogan and an attractive logo, a general advertisement poster, an informational poster, and a brochure (Table 2). We also offered a monetary incentive of $15.00 in cash to each participant who completed the questionnaire. It is noteworthy that the cash incentive was not the primary motivating factor; incentives were effective not because of their monetary value, but simply because we made the effort to offer them at all. Most men in the current study commented that before we approached them, they had never been invited or offered money to participate in a research study. For these men to want to participate, it was most important that we were interested enough to involve them and that we valued their input. Some men stated that we did not need to provide them with the monetary incentive and that they would participate without it. Others asked that we donate the money to a charitable organization so that it could be used for a worthy purpose.
|Created an attractive, colorful logo and an appealing slogan—It's All About U|
|For general advertisement, developed a colorful, Afrocentric poster containing a call to action—“Ask your doctor today: Prostate health promotion”|
|Collaborated with the American Cancer Society to use their Let's Talk About It informational poster and brochure personalized with the project logo and slogan|
|Provided a $15.00 cash incentive|
|Designed a full-color, Afrocentric test instrument (160-item questionnaire)|
|Utilized an Afrocentric approach to developing the recruitment protocol|
Our findings are consistent with those of Herring et al.24 and Barber et al.31, who noted that blacks tended to participate in prevention activities when they received personal attention. Our culturally appropriate recruitment materials included an 18-page, full-color survey, which was written at a sixth-grade reading level and included attractive pictures of middle-aged black males depicted positively in various life situations (including professional situations). Open-ended and closed-ended questions were framed around themes that emerged from the current study and used phrasing that was familiar to our respondents. In addition, all posters and brochures featured Afrocentric themes and colors and were displayed at participating sites.
Similar to work of Nivens et al.,30 the material was viewed as an opportunity to educate as well as recruit. At one community meeting, attended by 60 men, even those who did not qualify to complete the survey stayed for the entire surveying process. In addition, after completing the survey, participants stayed to discuss prostate cancer prevention and plans for outreach to other black men.
Respondents were eager to participate in the current study and freely offered suggestions on how to reach other black men. In fact, we were forced to halt recruitment and turn away participants because of depleted fiscal resources for the project. Most men in our focus group appreciated the fact that a monetary incentive; and specifically a cash incentive, rather than a money order, gift certificate, or voucher; was offered. Other recruitment strategies that were suggested by participants are listed in Table 3. Male group meetings allowed information and life experiences regarding prostate cancer to be shared in a relaxed, nonthreatening environment. In agreement with our cultural model, older men were perceived as role models. Participants also felt that significant others would have considerable influence if they had accurate information on prevention actions and shared the information in a caring, empathetic manner. Many men volunteered to do whatever they could to inform others about prostate cancer prevention. In fact, during the follow-up phase, some men who had moved to the East Coast continued to participate in the study. Participants also identified methods that would not be successful in reaching them. For instance, participants felt that church outreach and health fairs were not effective in making contact with black men. They felt that a vast majority of black men did not go to church or attend health fairs, especially for matters as private as prostate cancer prevention. In addition, participants felt that the hospital was not an appropriate place for reaching black men with messages regarding any type of prevention, because of the belief that black men generally visit the hospital when they are in pain and therefore would not be receptive to such messages.
|Provide pamphlets for employers to distribute to their employees|
|Create an appealing slogan and publicize it using various types of media (television, radio, billboards, and newspapers)|
|Provide reminder messages|
|Advertise heavily—simply flood the public with information|
|Rely on word-of-mouth|
|Include in church calendars (to reach potential participants' significant others)|
|Provide free services|
|Have physicians promote the program in their offices|
In summary, many black men had clear preferences regarding healthcare sites; specifically, they preferred one-on-one settings to more open situations involving strangers. Consideration of African American culture was a powerful factor in the development of the current multifaceted recruitment approach. Taken together, our approaches acted as a bridge to 1) attract the attention of black men; 2) engage them in conversation; and 3) sustain their interest and involvement in prevention activities. Black American men have been disconnected from American society for so long that effective strategies for reaching, engaging, and sustaining relationships with them must be implemented on an ongoing basis and not merely for the duration of a particular study. Consideration of culture is critical to the engagement process.
Having black professionals work with this population has been discussed as a viable solution for increasing trust. Nonetheless, caution must be exercised in using this strategy. Simply being black is not sufficient for success; these professionals must be compassionate and approachable as well. If a black professional does not identify with the population being served, and if the population does not perceive the professional to be caring or dedicated to the task or appreciative of the uniqueness of the culture, then these attempts to engage blacks in health-related activities will have limited success.
The age and ethnicity of staff members influenced the engagement of the current study population. Volunteer outreach workers were young, English-speaking, Hispanic college students who were trained to administer the questionnaire. These volunteers were not as readily received as a middle-aged black female researcher was; non-American black male researchers also were not as readily received.
Participants felt that the Afrocentric materials were appealing and worked to attract their attention. Nonetheless, these materials alone were not effective. The use of a personal approach, demonstrating commitment to the process and to the participants' health needs, yielded personal connections. The way in which men were approached indicated a commitment to the process and to the relationship formed with these men. When individuals perceived that we had a real interest in them and that we were committed to maintaining a relationship that was respectful and accepting of their cultural values, norms, and heritage, they were exceptionally open to participating. This personal approach earned the participants' trust, which was a prerequisite in their decision to enter the study.
Historically, African Americans have been considered to be a race, rather than an ethnic group with its own set of cultural values and norms.32 In discussing the historical beginnings of African American culture, Bailey,32 a medical anthropologist, traces the roots of influence back to West Africa. According to Bailey, like members of other ethnic groups, individuals who trace their lineage back to West Africa share a common history, place of origin, and language, as well as food preferences, values, and health beliefs, all of which create a sense of exclusiveness and self-awareness regarding membership in the group. These historical roots must be considered closely in seeking to include black males in research studies, given the prevalence of racism in the United States and the negative legacy left by the public health prevention study on syphilis that took place in Tuskegee, Alabama. Culture, gender issues, and preferences are factors that must be taken into account in recruiting blacks into research studies.
Although the culturally sensitive approach used in the current study was effective in reaching African American men, it was received with some controversy. Some non-Hispanic white males were made uncomfortable by our promotional materials, which depicted black men in a strong, virile, positive manner. Study participants, however, responded positively to the materials and identified them as a motivating factor for their participation. The stereotypic, negative-laden image of black men in the media hampers the ability of these men to develop positive relationships within our society and limits their connection to the healthcare system, which is dominated by white males. Recruitment of black men under these conditions is difficult, but we were able to eschew stereotypic views and reach and engage these men in recruiting them into research on prostate cancer prevention.
The authors are indebted to the study participants. The authors also thank their local regional medical center, Veterans' Administration association, and private healthcare system for their assistance in conducting the survey; and they thank the California Division of the American Cancer Society for its assistance in providing ethnicity-specific patient information.
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