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Prostate cancer (PrCA) is the most commonly diagnosed non-skin cancer among men. African-American (AA) men in South Carolina have a PrCA death rate 150% higher than that of European-American (EA) men. This in-depth qualitative research explored AA men’s and women’s current practices, barriers, and recommended strategies for PrCA communication. A purposive sample of 43 AA men and 38 AA spouses/female relatives participated in focus groups (11 male groups; 11 female groups). A 19-item discussion guide was developed. Coding and analyses were driven by the data; recurrent themes within and across groups were examined. Findings revealed AA men and women agreed on key barriers to discussing PrCA; however, they had differing perspectives on which of these were most important. Findings indicate that including AA women in PrCA research and education is needed to address barriers preventing AA men from effectively communicating about PrCA risk and screening with family and healthcare providers.
Prostate cancer (PrCA) is the most commonly diagnosed non-skin cancer and the second leading cause of cancer death among men. In 2012, approximately 241,740 new cases are expected to be diagnosed and 28,170 deaths from PrCA will occur in the United States (U.S.) (American Cancer Society, 2012). The burden of PrCA is not uniform across racial and ethnic groups. For example, both PrCA incidence and mortality are significantly higher in African-American (AA) men compared with European-American (EA) men (American Cancer Society, 2012). In South Carolina, PrCA disparities are more extreme than in the country as a whole (Drake et al., 2006; National Cancer Institute, 2008; U.S. Department of Health and Human Services, 2012). AA men in South Carolina experience extremely high incidence and mortality from PrCA (Drake et al., 2006; National Cancer Institute, 2008; U.S. Department of Health and Human Services, 2012). In an effort to reduce this excessive cancer burden, Healthy People 2020 (U.S. Department of Health and Human Services, 2010) and the Institute of Medicine (IOM, 2004) support the use of effective, plain language and culturally appropriate cancer communication strategies.
Having accurate and reliable information about how to screen for, prevent, and control cancer is critical for motivating and sustaining healthy behaviors (National Cancer Institute, 2001). In South Carolina, it is important that AA men are clearly informed about PrCA because of the significantly higher incidence and mortality from the disease among AA men in the state and because of recent controversy regarding PrCA screening using the prostate specific antigen (PSA) test. Much of this controversy derives from frequent false-positive results of the PSA test and from detecting cancers that are too slow growing to be a health threat (Barry, 2009; Barry & Mulley, 2009; Draisma et al., 2009; Smith, Cokkindes, Brooks, Saslow, Shah, & Brawley, 2011). Over-diagnosing indolent disease can lead to serious negative consequences such as bleeding and infection from biopsy, and incontinence, erectile dysfunction, and other complications from unnecessary surgical and radiation treatment (National Cancer Institute, 2011). The most recent statement of the U.S. Preventive Services Task Force indicates that PSA screening results in small to no reduction in PrCA mortality that is more than countervailed by the adverse consequences of screening (Chou et al., 2011). However, the evidence against PrCA screening is based on two large randomized control trials that involved little active participation by AA men (Andriole et al., 2009; Schroder et al., 2009). The Andriole et al. study (2009) found that death rates did not differ significantly between the screening group and usual care group. The Schroder et al. (2009) study found that while PSA screening reduced PrCA deaths by 20%, it was associated with a high risk of overdiagnosis. Although virulent cancers represent a small portion of the total PrCA burden in the general population, their incidence in AA men is significantly higher than in EA men (American Cancer Society, 2011; Drake et al., 2006).
The American Cancer Society (ACS) strongly recommends shared decision making between healthcare providers and patients regarding the decision to screen (Smith et al., 2011; Wolf et al., 2010). However, prior research suggests that men, including AAs, prefer to take a passive role in their healthcare. They tend to have difficulty understanding cancer prevention information, relying strongly on female relatives and healthcare providers for cancer education and screening decision making (Davison, Degner, & Morgan, 1995; Friedman, Corwin, Dominick, & Rose, 2009a; Friedman, Corwin, Rose, & Dominick, 2009b; Jones et al., 2008; Levinson, Kao, & Thisted, 2005; McFall et al., 2009). The fact that men may become informed from sources other than their providers indicates a high degree of saliency of issues related to cancer within their social environment, and their decision to seek PrCA screening may initially not come from a dialogue with a provider. We also recognize that not everyone may have a regular source of care with which to collaborate to make health and cancer decisions. By including “potential others” (e.g., spouse, family, friends) and considering the larger social and cultural context, decision making processes may become more complex and require more coordination.
Previous research indicates that women often act as overall health advocates for their families (Friedman et al., 2009a; Levinson et al., 2005; Nussbaum, 2000). Because AA men often rely on women for health information and medical decision making, AA women also need to be informed about PrCA. This study contributes to the limited literature examining the role and involvement of AA female family members in PrCA education research (for example, Blocker et al., 2006; Forrester-Anderson, 2005; McFall, Hamm, & Volk, 2006).
Guided by principles of community-based participatory research (Israel et al., 2003; Minkler & Wallerstein, 2003) and culturally and linguistically appropriate recruitment and communication strategies (Doak, Doak, & Root, 1996; U.S. Department of Health and Human Services, 2010), the purpose of this qualitative research is to assess the current practices, barriers, and recommended strategies for PrCA communication among AA families in South Carolina. With such high rates of PrCA in this state coupled with the controversial and potentially confusing screening guidelines, it is essential that men are clearly informed about PrCA and provided with strategies for communicating about cancer so they are able to participate in important decision making discussions with family and healthcare providers. This study employed a modified version of Vesey’s framework on recruitment, participation, and retention of minority groups in research (Vesey, 2002). Strategies included: conceptualization, planning, and development of the research and recruitment plan and study materials in collaboration with community partners; recruitment of study sample with community partners; development and conduct of culturally appropriate education sessions and pre/post-education assessments; the reporting of findings to the community; and engaging the community and community partners in planning for future research. Findings from this study were used to inform the content, implementation, and dissemination of a community-based PrCA screening and informed decision making education program conducted with AA men and women in spring 2011.
Interpersonal and media-based recruitment was conducted over four months. Recruitment strategies were developed and conducted collaboratively by the research team, clinical partners (a National Cancer Institute Community Cancer Centers Program/NCCCP), and an advisory panel of AA community leaders and cancer educators (Friedman et al., 2012). Strategies included education and promotion at health fairs, churches, community meetings, and medical/oncology-related appointments; radio promotion on stations with a large number of AA listeners; messages on AA community organization and healthcare system websites and listserves; flyer distribution in newspapers; and word of mouth. Recruitment procedures and all study protocols were approved by the institutional review boards of the University of South Carolina and Spartanburg Regional Gibbs Cancer Center NCCCP.
Participants were asked to participate in a focus group discussion and to complete a brief questionnaire eliciting descriptive information (e.g., gender, age, education, personal health and cancer information-seeking and screening behaviors). A 19-item focus group protocol with open-ended questions was developed in collaboration with the NCCCP and community advisory panel. This paper focuses on emergent themes about PrCA communication. Relevant topic domains were: current practices and comfort level in PrCA communications with healthcare providers and family members; barriers to discussing PrCA within AA families and with providers; and recommended strategies for doctor-patient and family communication about making informed decisions for PrCA screening. Focus groups ranged in length from 90 to 120 minutes and were audio-recorded. A total of 22 focus groups, 11 with AA men and 11 with AA women, were conducted at a local public library between February and April of 2011. The number of participants per focus group ranged from two to seven.
The research team conducted each focus group with one moderator and one note taker. All focus groups were homogenous with regard to gender. Moderators were gender-matched to participants (e.g., male moderator for focus groups with AA men). Participants were informed in writing and verbally of the purpose of the focus groups. They signed informed consent forms prior to the start of the focus groups. Moderators used comprehensive probes to obtain and clarify participants’ responses to focus group questions. Culturally sensitive and appropriate language was used to describe the research process and conduct the focus group sessions. Participants were compensated for their time with a gift card incentive.
Data collected from the demographic surveys were entered into SPSS® 18.0 (SPSS Inc., 2010) and analyzed using descriptive statistics (nonparametric frequencies and percentages). Digital audio files from the focus groups were transcribed verbatim into Microsoft Word® by a professional transcription service. Transcripts were edited to remove personal identifiers; text files were entered into NVivo9® (QSR, 2010), a qualitative data management program, for coding, text retrieval, and data organization. For codebook development, two informative transcripts were selected and independently read by the members of the research team. Using the discussion guide as an initial framework, semantic codes were manually assigned to sections of focus group text and compared to ensure consistency. During this “open coding” process, codes were discussed until consensus was reached about the definition of each code and a comprehensive list of codes was finalized (Strauss & Corbin, 1998). Agreement on at least 85% of codes between the pair of coders was considered an acceptable threshold for coding consistency. Inter-rater percent agreement falling within the 70–90% range has been considered appropriate for qualitative coding (Laditka et al., 2009; Miles & Huberman, 1994). Coders discussed any discordant rating of codes until 100% coding agreement was reached. Two researchers integrated and conceptually organized the lists to form the first draft of a master code book. Each transcript was then re-coded using this codebook. New codes were developed as needed. Coded data were reviewed for accuracy and examined for links to other codes. This “axial coding” connected code categories and identified relationships between codes that are suggestive of themes (Strauss & Corbin, 1998). Furthermore, as part of the ongoing analytic process, comparing and contrasting themes within and across groups (“constant comparison method”) helped detect similarities and differences in the data (Glaser & Strauss, 1967). Verbatim quotes validated researchers’ coding and interpretation of the data.
Demographic and information-seeking characteristics of focus group participants by gender are shown in Table 1. A total of 81 individuals (43 AA men; 38 AA women) ages 21–77 (mean age men: 52 years; mean age women: 50 years) participated in this study. Of the 81 participants, 36 (44.4%) were employed full time, 8 (9.9%) worked part time, 24 (29.6%) were unemployed, and 13 (16.0%) were retired. The plurality of participants (had annual incomes between $20,000 and $39,000 (n=30/79 or 38.0%) or below $20,000 (n=27/79 or 34.2%). Twenty-nine of 78 participants (37%) were high school graduates or had obtained a GED; 24 of 78 participants (30.8%) had some college or technical training; and 14 of 78 participants (17.9%) had obtained bachelors or graduate degrees. Seventeen of 39 (43.6%) female participants reported participating in the study with their husband or significant other; 9 of 39 (23.1%) participated with a friend. Fewer females participated with a brother (n=6/39 or 15.4%), son (n=4/39 or 10.3%), uncle (n=2/39 or 5.1%), or father (n=1/39 or 2.6%).
When asked about their current sources of cancer information, 58 of 79 participants (73.4%) reported receiving information from their regular doctor. Other frequently reported sources included television (n=32/79 or 40.5%), family members (n=25/79 or 31.6%), Internet (22/79 or 27.8%), newspaper (22/79 or 27.8%), magazines (n=21/79 or 26.6%), community health educator (n=14/79 or 17.7%), and radio (n=14/79 or 17.7%). Most (n=44/66 or 66.7%) also indicated that their regular doctor was their preferred source of cancer information followed by community health educator (n=16/66 or 24.2%).
Interview themes reflected participants’ perceptions, preferences, and practices related to PrCA information seeking and communication. Representative participant quotes are presented to support the emergent themes focused on PrCA communication. Table 2 describes and ranks themes and subthemes by gender.
Focus groups revealed that the majority of men had discussed PrCA more frequently with the women in their lives, especially wives and significant others, than they did with their doctors or with other men. Although some of those conversations with women were about PrCA in general, most of them were specifically about PrCA screening. One participant recalled a conversation he had with his wife about his anxiety over the digital rectal exam (DRE). He said, “I told mine about the prostate screening, how I’d rather get a butt-whopping than go through that.” Another participant described how a discussion he had with his doctors ultimately led to a conversation with his wife about PrCA screening: “When my doctor mentioned about doing the test, I talked to my wife about it.”
Just over half of female participants reported having conversations with the men in their lives about PrCA risk and screening. Women frequently said that they had discussed PrCA for the first time with men as the result of participating in this particular study. Nearly half of the female participants said that previously they had not talked with the men about PrCA in general or about screening. For instance, one participant said, “We just started talking about it when I got the information about this.” Several other women made similar statements.
Many men stressed the importance of not only including women in conversations about PrCA but also in discussions about their general health. Men described confiding in women who were close to them, explaining that they knew it was particularly important for their wives or significant others to know about their health concerns and issues. Many men said they felt open and trusting of the women in their lives with respect to their health and medical needs. “Me and my wife, we got a mutual thing. I mean, if there’s anything wrong with me, I come to her and tell her about it. I ain’t got nothing [to be] embarrassed about.”
Although the majority of men reported talking to women, especially their wives or partners, about their health, the female focus group participants did not necessarily agree with them. In fact, the majority of the women stated that they did not think the men in their lives spoke enough with them about their health. When recalling conversations about men’s health, several women mentioned trying to convince or encourage men into going to the doctor or adopting a certain health behavior such as healthy eating. Women identified themselves as being the “instigators” of such conversations.
A few women expressed that their husbands or partners were very (or even too) open about their health. This was particularly true of older men. When asked how much her husband shares about his health, one woman said: “A little too much. And it’s not that he complains [but] we are getting older, so that has a lot to do with it you know….He lets me know when he has aches and pains, and sometimes that’s a good thing.” Most of the women who said their husbands did speak with them about their health reported that such conversations were bidirectional, with both men and women being open with each other about their health and ailments.
Focus group discussions revealed that men typically had more discussions with the women in their lives about PrCA than they did with healthcare providers or with other men. However, even though men reported talking to women about PrCA, many of them did not feel comfortable having such conversations. The women had conflicting views on this issue, with about half reporting that men were not comfortable talking with them about PrCA.
The majority of men said they felt comfortable talking about their overall health and PrCA with their doctors. Many men also said they were comfortable communicating about PrCA and their general health with other men. Several men stated they were comfortable talking about PrCA specifically, explaining that as you get older, the more you talk about illness. One man said, “The guys that I am around now, I mean, so many people that are dying from it [PrCA], and we have—we do discuss it.”
Many men mentioned that they would feel most comfortable talking with people who were similar to them, stating they would talk to other men who shared the same health concerns, including PrCA. One man explained, “You wanna talk to people that are in a similar group….they already know what you’re going through because they [are] going through the same thing.” Some men, however, said they felt more comfortable discussing PrCA with women than they did with other men, explaining that it would not be natural to begin these types of dialogues with other men. Talking about his experience with other men, one participant explained between laughter, “That really never really comes up in a conversation.”
Older men in the focus groups were more open to discussing PrCA with other men than were younger men. One man explained, “When you get in your 60s, I mean, you know, you can—I talk about it. Try to encourage other men to…check on their self.” Other men explained that being older made them care less about how others would perceive them and their problems, which made it easier to talk about sensitive issues such as PrCA. One man said, “When you get a little older, you get to understand that I don’t care what he says. I’m trying to live.”
Female participants stated that they thought men would feel more comfortable talking in a group of men than they would one-on-one with another man. Further, one woman said that she thought comfort levels would depend on age and circumstance, explaining:
If the ones [who] have already been through it, then they’ll feel more comfortable telling them younger ones, you know, or just talking about it in general and letting them know, you know, ‘You know, guys, you really do need to get yourself checked.
How comfortable men said they felt talking about PrCA with women depended on the relationship they had with the woman. In general, men were more likely to state they were comfortable talking to women if it was with their wife. When asked who he would feel most comfortable speaking with about PrCA, one participant remarked:
I’d feel more comfortable talking to a man than a woman, unless it’s my lady. Like he said his wife. I’d feel comfortable talking to her cause my lady is just my best friend, so I’d rather talk to her….if it ain’t her, I’d rather talk to a guy about it.
Whether men were speaking of their doctors, male friends, or female companions, their comfort levels related to discussions about PrCA related to the strength of the relationship with the person and the other person’s PrCA experience or knowledge. Ultimately, there was great variety in men’s comfort levels, ranging from men who were extremely open to discussing PrCA with anyone to those who had never spoken about PrCA before attending the focus group.
Male and female focus group participants had different perspectives regarding why some men may not discuss or feel comfortable discussing PrCA with healthcare providers or family members. Four key barriers to communicating about PrCA emerged in the discussion groups with men: 1) fear of cancer, 2) discomfort of DRE screening, 3) embarrassment/pride, and 4) masculinity. Key barriers that emerged in the focus groups with women were: 1) masculinity, 2) embarrassment/pride, 3) discomfort of DRE screening, 4) cultural factors, 5) privacy, and 6) fear. Although men and women agreed on many of the potential barriers preventing men from talking about PrCA, they had differing perspectives on which served as primary barriers.
Men most commonly stated that fear was the main reason why AA men did not discuss PrCA with healthcare providers or family members. The three most common fears discussed were discomfort of the DRE, the fear of possible adverse outcomes (i.e., cancer diagnosis), and fear of cancer in general. When asked why AA men did not talk with their doctors or family members about PrCA, one man said:
It [the DRE] is the biggest fear. I think when I first got one I was standing in the line and I’m hearing all these things about the guy with the big fingers, doctors with the big fingers, and said, ‘You’d better get a lady,’ and all these things and they’re going up in you, especially we’re men, we’re masculine.
Men focusing on fears related to PrCA diagnosis often made statements such as “they don’t want to know.” One participant said, “Anything that a black man thinks is gonna kill him, he ain’t gonna want to talk about.” Frequently, men’s discussions of fear went beyond PrCA, speaking about cancer-related fears in general. When explaining why men did not talk about PrCA, a male participants stated, “They don’t talk about it because they get afraid. You know, you say something like cancer, you know, people get afraid to talk about it.”
Male focus group participants also commonly focused on barriers related to the DRE more generally. Although sometimes this barrier related to potential discomfort of the test, other men discussed this barrier in terms of shame. When asked why men do not talk about PrCA, one man said, “[They are] ashamed of the test.” Embarrassment and pride were the next most commonly discussed PrCA communication barriers reported by the men. Embarrassment was also sometimes described as shame, with men stating that men might not only be embarrassed but also ashamed of being diagnosed with PrCA. The shame associated with PrCA seemed to relate specifically to preconceptions regarding PrCA treatment and impotence.
Discussions about impotence and about PrCA in general often related to broader ideas of masculinity, especially as they related to sexuality. For example, “I think anything dealing with your manhood, that’s big. It really is, whether it be high blood pressure medicine or whatever. I mean, it does something to you. I think that has a big factor in it too.”
Female participants most often stated that masculinity was the number one barrier to PrCA communication among men. Similar to discussions about masculinity with male participants, the women commonly discussed masculinity in terms of sexuality. They also made statements about the importance of masculinity especially for AA men. A representative quote from a female participant was: “It deals with the male organs and that’s probably why. You know, because men are kind of private when it come to—black men especially—when it comes to sex.”
The second most common barrier to PrCA communication discussed by women was embarrassment and pride. Because PrCA was commonly associated with the male sex organs, women believed that men were embarrassed to talk about the disease. For example, “Yeah, the black men seem to take pride in their number one organ. They don’t want nobody to say some things wrong with it. So they won’t even do nothing about it to make sure nobody knows and they say that’s why Michael Jackson, everybody be holding this. That’s their prized possession.”
Similar to men, women also reported communication barriers related to men’s discomfort with the DRE. When asked what might prevent males from talking to their doctors about PrCA, one female participant stated, “Simply the fact that they have to have a rectal exam.” A barrier that only women mentioned related to culture, particularly communication practices among African-American families. Several women spoke specifically about African Americans’ reluctance to talk about cancer in general. One participant said, “I’ve noticed in African-American families, we just don’t discuss it [cancer] like we should.”
Another barrier women frequently mentioned related to men’s desire for privacy. Women stated that men were extremely private about health issues that they perceived to be related to their masculinity. According to the women, men’s desire for privacy concerning their health extended beyond their friends and families to their doctors. For example,
He doesn’t like talking to doctors. He doesn’t like talking to family members because it’s his business and not theirs. They do not like to share that kind or any kind of stuff, actually, about themselves with family because remember, they got to be macho.
Although men most frequently identified fear as a barrier to PrCA, women mentioned this least often. However, similar to the men, women discussed fear in the context of the DRE or cancer diagnosis. Women stated that the invasiveness of the exam made men fearful of the exam, discouraging them to discuss PrCA screening with their family members or doctors. Women also related the lack of communication about PrCA to a fear of cancer in general. One woman said, “People are scared about it [cancer], and they don’t want to know. So it’s almost like if they don’t know about it, it doesn’t exist.”
When asked about the recommendations for improved and open PrCA communication among AA men, families, communities and healthcare providers, participants suggested specific groups who needed PrCA education and several locations and strategies for providing this education.
When asked who would be the hardest population to reach with PrCA risk and screening education, women consistently agreed that older men would be harder to reach because of their tendency to be “stubborn” and “fatalistic” while younger males may be more open to discussion. Representative quotes from female participants were as follows:
I don’t think it would really be a whole lot of problem with the younger generation, the middle age, because they’re more open. They’re more open.
Yeah, because [older men] they set in their ways and well, I got to die from something and normally they’re, with black men, if they haven’t been raised to do regular checkups and go to the doctor, they don’t want to go, even when they hurting they don’t want to go.
Conversely, men felt that the younger AA male population would be more difficult to reach because of denial that they may have or could eventually develop the disease. Focus group participants attributed the younger men’s denial to their association of the disease with older men. One middle-age participant said, “Some of my core group they think they’re too young – most of them. Well, ain’t nothing wrong with me.”
The most often recommended location for reaching AA men (young or old) with PrCA information was the church. The majority of both men and women agreed that the church was a place where many people in the AA community could be reached at one time. One male participant said, “All of us folks go to church…that’s the only way you’re gonna reach most of these people, because they’ll take time out for that.” A representative quote from a female participant was, “You’ll find more [African Americans] in church than anywhere else.”
Following churches, barbershops were the most commonly recommended location by male participants for providing PrCA awareness because men visited barbershops regularly. Male participants also suggested that barbershops offered a unique environment, allowing barbers to serve as frontline providers of prostate information and educational materials. “And your barber love to talk. You got that letter to – that information laying there, you know, that’d be something good.” Female participants mentioned that men visited barbershops routinely and they should therefore be considered a location for PrCA education. One female participant stated, “Yeah, mainly on Saturday at barbershops that’s where they [men] gather.”
Another location recommended more often by women than by men for providing PrCA awareness was the workplace. Women suggested that the workplace could be a particularly effective method when held in conjunction with an event when free services were provided. One female participant said, “…where I work we go and do health fairs and stuff. And a lot of times, when the employers offer free medical screenings and stuff, you’ll see their employees come out and get it.”
Male participants recommended that cancer educators visit various businesses to provide employees with PrCA resources such as pamphlets. One male participant stated, “Take it down to the job... and spread the word.”
In addition to recommending the church as a venue for providing PrCA awareness and promoting PrCA communication, both men and women suggested that the church get involved in the actual planning and implementing of cancer education programs. Most commonly suggested strategies for church involvement included: 1) having a special event such as a health fair, 2) making educational materials accessible in the church, and 3) asking the pastor to spread the word about the latest news on PrCA screening. Some participants reported prostate and non-prostate-related events that had been held at their respective churches. Women’s recommendations focused primarily on promoting church sponsored events that invited the community to participate in free health-related activities.
I know, for African Americans, we are church-goers and a lot of times, we have a lot of things brought to our church and that’s how we educate. Our healthcare fair has been very effective, so that’s a big help for us, I know. And our community.
Male participants’ recommendations were aimed at providing access to educational resources within the church and using the pastor as a conduit to providing health information to the congregation.
I’d start with my church and my pastor ‘cause I know him pretty well, and more or less get him to start talking to people about it. Maybe mentioning it after the sermon or before the sermon, community centers around the area, things like that.
The second most commonly recommended strategy by both AA men and women for creating community awareness about PrCA and promoting communication was through word of mouth or face-to-face education. They suggested this method would offer a more personal experience for community members and would ensure that they did not ignore the information being discussed. One female participant stated, “I mean, people notice things right in their face.”
Some male participants also thought that providing information through word of mouth could create a situation where PrCA information would spread widely throughout the community.
Three of us in here right now, two of us are gonna go out and talk to somebody and touch somebody, and they’re gonna believe what we say. And, I mean, that’s about the only way you can do it is just one person at a time.
Male and female participants agreed that there should be strong female involvement to increase education about PrCA screening in the community and encourage men to speak with their doctors about PrCA screening. Women suggested female involvement more often than men did. They believed that they served as sources of health information for men as well as motivators for men to maintain their health including doctor visits and screening. A female participant stated,
But it’s going to have to take that person that’s close to that man. And that’s going to be that woman, that daughter, that niece, whoever is in that house with that man, you know, that’s going to be the person that’s going to be able to. She’s gotta know that information and stress how important it is for them to act on what they need to do.
Male participants shared that women in their lives had a motivational role. One male participant stated, “I’m gonna be honest with you. The only thing that would make me go [to doctor] is the women. You asked what would motivate a person. It’s women.”
Another strategy recommended more often by males was collaborating with radio stations to promote PrCA education. Some participants believed that the radio could be effective because it was accessible to most community members. One male participant stated, “They talk about prostate on there, you know. And that’s what you need, some venue like that, something this big that can get through the mass of people.”
More specifically, both men and women suggested that the radio could be used to make public service announcements: “But that’s a good way of getting it out ‘cause a lot of people do listen to the radio, or they could be just turning past the station and catch it” [male].
Male participants also indicated that the radio could serve as an effective resource for providing information about upcoming health fairs and other community events where prostate education was being provided.
AA men and women recommended the mass distribution of pamphlets and flyers to educate the community about PrCA. After learning that AA men in South Carolina experienced the highest PrCA mortality rate in the country (Drake et al., 2006), one male participant stated, “South Carolina’s number one state in the United States, you should be – they should be dropping leaflets from planes in South Carolina, because there should be more done.” In addition to making printed resources available in churches, barbershops, and workplaces, participants suggested distributing pamphlets in stores, around neighborhoods, and through direct mail. One female participant commented, “Probably would talk to some of the neighbors around there, or if I had pamphlets I’d hand the pamphlets out. Putting pamphlets on everybody’s door.”
Both AA men and women also described the importance of providing education that would inform them about the function of the prostate, PrCA symptoms, and the risks and benefits of screenings. One male participant stated the need to dispel myths related to PrCA and educate people about the prostate, stating that “a lot of time they hear about it [PrCA], but they don’t know the symptoms…but I think that education…it saves lives.” Similarly, a female participant said, “You’ve got to start some education. We’ve got to talk to each other about it.”
Male participants indicated that they expected the upcoming education program to motivate them to discuss PrCA screening with their doctors. They also believed it would inspire them to encourage other family members to communicate with their doctor about PrCA screening. In response to how to motivate men to discuss PrCA with their doctors, one male participant stated, “When I get back and educate’ em. Most of my brothers are older than me and I’m 50, so they need to get on up in the there a visit their visit doctor.” Female participants also mentioned their desire to share PrCA information with men in their families and the need for PrCA education programs such as the one they were currently participating in as part of the study. One female participant said, “I have a brother. I have nephews, and so yeah, I want to know more about it [PrCA], so that we all can be educated on it.”
Community-based events were recommended in both men’s and women’s focus groups. Participants thought events, particularly those that provided incentives such as food or medical services, would be effective because they would attract many community members. “People come to those events because they’re there and you got a booth there and they’re going to come and they’re going to check it out” [female].
Male participants stressed that these events needed to be equally accessible to everyone. One participant stressed the importance of taking information to people: “Go to ‘em mobile, a lot of people have transportation problems.”
Using television to promote PrCA messages was rarely suggested by participants. One male participant thought the news would be effective for older adults, stating, “A lot of older people watch news a lot. That’d be a way of catching their attention.” Concerned about the costs and placing of advertisements (i.e., timing), female participants were somewhat less certain about the potential influence of television advertisements on cancer knowledge or decision making. They mentioned the cost of commercials and the likelihood of people missing or ignoring commercials on the television.
This qualitative focus group research assessed both AA men’s and women’s current communication practices, barriers, and recommended strategies for PrCA communication. Formative qualitative research is being used increasingly in health disparities research to identify key trends and issues from which to determine public perceptions and knowledge, preferred dissemination strategies, and to conduct message testing (Friedman, Tanwar, Yoho, & Richter, 2010; Ruff, Alexander, & McKie, 2005). As participants in formative research, community members become part of and contribute to solutions to community-related concerns and issues.
Being able to communicate about PrCA and make informed decisions about PrCA screening within families and with healthcare providers is critically important given the most recent statement of the U.S. Preventive Services Taskforce. Furthermore, findings from this study have important implications in South Carolina given that mortality-to-incidence ratios (MIRs) for PrCA in this region are significantly higher in AA men than in their EA counterparts; i.e., 58% higher for PrCA (Hébert et al., 2009).
This was one of few studies to include AA women in formative research about PrCA screening decision making (Friedman et al., 2012). AA women are typically health information seekers for their families and influence men’s health and cancer decisions. Other research has demonstrated older AA men’s reliance on immediate female family members for monitoring their health needs and answering medical questions (Friedman et al., 2009b; Levinson et al., 2005). Thus, spouses and partners are an important audience for the delivery of PrCA messages. Further, including AA women in this research was essential for understanding and addressing all perceived barriers preventing AA men from discussing PrCA with family and healthcare providers. Findings revealed important similarities and differences in emergent themes between men’s and women’s groups. AA men and women agreed upon the primary barriers preventing men from discussing PrCA, but they had different perspectives on their relative importance. For example, women more often mentioned masculinity as a barrier while men discussed their fear of talking about cancer. Also, if women are correct in their opinion about the inverse relationship between a man’s age and his receptivity to discussing screening (and related issues) it could have important public health consequence as screening in older men is generally futile (von Eschenbach, 1996).
While focus group discussions revealed that men typically discussed PrCA with significant others more often than with healthcare providers, the men expressed that they did not necessarily feel comfortable having such conversations with women and they preferred to talk about PrCA with their doctors. This finding supports other prostate cancer communication research conducted in the South showing that AA men reported having discussions about the advantages and disadvantages of PrCA screening with their doctors (Ross, Powe, Taylor, & Howard, 2008). However, some qualitative research in South Carolina demonstrated that doctors were not considered key sources of cancer prevention information (Friedman et al., 2009b). Nonmedical sources most likely to influence men’s health decisions and behaviors were family members and community leaders. Because men may be consulting with family and community for cancer decision making, future research and interventions should consider a team approach to decision making. Other interviews conducted with AA men about PrCA screening decisions have revealed the importance of social support (e.g., spouse, family, church community) and sharing testimonials with family and friends during the decision making process (McFall et al., 2009).
AA men and women provided similar recommendations for PrCA education locations and strategies. The focus groups and subsequent education sessions were held at a local library. While the library location was convenient for participants, recommendations were made for alternate cancer education venues. The church was mentioned most often by both male and female participants as a potential partner and location for PrCA education programs. Faith-based settings have been effective for engaging AAs in other communities in healthy behaviors and are considered a culturally appropriate strategy for reaching communities for whom spirituality may play an important role in making health decisions (Drake, Shelton, Gilligan, & Allen, 2010; Friedman, Hooker, Wilcox, Burroughs & Rheaume, in press; Holt, Wynn, & Darrington, 2009a; Holt, Wynn, Litaker, Southward, Jeames, & Schulz, 2009b; Holt, Wynn, Southward, Litaker, Jeames, & Schulz, 2009c; Mayo et al., 2009). Barbershops also were recommended by both men and women. They have been considered a successful and culturally appropriate venue for recruiting AA men into health programs (Linnan et al., 2010; Releford, Frencher Jr., Yancey, & Norris, 2010) and for PrCA education with AA men (Luque, Rivers, Gwede, Kambon, Green, & Meade, 2011). Interventions in community-based settings have demonstrated significant improvements in PrCA knowledge, increased likelihood of discussing screening with a physician, and/or increased screening decision self-efficacy (for example, Holt et al., 2009b; Luque et al., 2011; Wray, Vijaykumar, Jupka, Zellin, & Shahid, 2011).
The most commonly mentioned strategies for encouraging communication and decision making about PrCA screening were involving church members and pastors in PrCA education, word-of-mouth and face-to-face discussions, radio advertisements, and involving women.
Engaging the faith-based community in PrCA education was strongly recommended by both AA men and women. Connecting with AA men through word of mouth also was a key strategy suggested by participants. Use of word of mouth to promote health messages has been recommended by AA men in other health behavior research (Friedman et al., 2009a; Friedman et al., 2009c) and is considered an effective strategy for recruiting AA community members into behavioral interventions (King et al, 2010). Although radio and mass media outlets have been recommended for reaching a large audience base with health and PrCA messages as demonstrated elsewhere (Friedman et al., in press; Sanders Thompson, Talley, Caito, & Kreuter, 2009), television was mentioned least often in both men’s and women’s groups. This finding is similar to other research in which community members perceived that watching too much television for health promotion purposes could be a major barrier to engaging in healthy behaviors (Friedman et al., 2009c). Examining both active and inactive AA men’s perceptions about how to market a physical activity to AA men of their age, more inactive men recommended media promotion (e.g., television public service announcements) and none of the older active men suggested television as a promotional channel (Friedman et al., in press).
This qualitative study has some limitations. The relatively small sample consisted of self-selected AA men and women from one southern U.S. state. Convenience samples are not representative of entire populations; however, it was not intended that focus groups findings be generalized to all AA groups in the state, in other regions of the South, or other racial/ethnic groups.
Findings informed strategies for improving prostate communication in South Carolina. Specifically, this study provided important recommendations for the design, implementation, and evaluation of a culturally appropriate PrCA and informed decision making education intervention for both AA men and women in South Carolina. It guided the development of a four-module pilot PrCA education intervention that involved 56 AA men and women (Friedman et al., 2012). Findings also will inform future examinations of cancer screenings and health and cancer decision making among AA families that considers social and cultural values and practices (Briss et al., 2004). Research on the feasibility of training both AA women and clergy to educate AA men about PrCA will be an important next step. Finally, knowledge from this research is likely to be useful to understanding the decision making process related to cancer screening behaviors as well as treatment (e.g., active surveillance) with potential connections to other health decisions.