Table 2
Themes/Intervention Messages Emerging from Participants’ Interviews
Prostate Cancer Care Continuum
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Themes
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Prevention
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- Need for advocacy message for prevention
- Need for and challenges of preventive lifestyle
- Limited awareness about prostate cancer
- Need for public awareness about prostate cancer prevention
- Need for education about prostate cancer prevention
- Lack of Knowledge and checkups.
- Perception of prostate cancer
- Importance of Black men’s health
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Screening
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- Need for screening without symptoms (due to family history of other cancers)
- Impact of masculinity on screening
- Importance of testing
- Locus of control
- Screening importance for Blacks
- Overcoming Digital Rectal Exam (DRE) myth
- PSA controversy
- Importance of screening on survival
- Physician as cue for action
- Procrastination by Black men.
- Cue by wife
- Importance of prostate cancer education
- Take Command of my Own Health
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Diagnosis
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- Denial
- Cancer Fatalism
- Disbelief
- Thoughts about Impact on Manhood
- Questioning (why me?)
- Exploring reasons
- Emotional
- Shock
- Hope
- Fear
- Fight / Resilience
- Need for immediate action / Urgency
- Acceptance
- Religiosity / Faith
- Will to live
- Delay taking action
- Need to be comfortable with physician
- Need for a second opinion
- Need for emotional support time to reflect on diagnosis
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Treatment
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- Treatment choices
- Locus of control
- Decision making – self reliance
- Decisional regret
- Decisional regret due to unrealistic expectation provided by physician
- Importance of social support, family support, asking for help, asking for support
- Making it your decision
- Shared decision making with physician
- Several consultations before treatment choice
- Information access
- Impact of adverse effects
- Acceptance of side effect
- Spirituality and medical knowledge working together
- Dealing with the gravity of diagnosis
- Informed decision making
- Unreliable sources of information
- Addressing side effects - unsatisfactory
- Learning from others’ experience
- Limited discussion by Physician
- Perceived control | Taking control
- Importance of personalized care
- Important of knowledge in treatment decision
- Right physician
- Interdisciplinary team
- Treatment expectation | Positive attitude
- Partnership with provider
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Survivorship
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- Changing view of meaning of prostate cancer (from fatalism to survivorship)
- Lifestyle change
- Survivorship meaning and impact
- Support
- Face of prostate cancer
- Prostate cancer at early age – implication for recovery and recurrence
- Dealing with Adverse effects: Impotency
- Focus on surviving
- Continued monitoring
- Need for information for survivorship
- Connection with those “who look like me”
- Support for self
- Support for spouse
- Access to physician
- Meaning of prostate cancer after diagnosis
- Dealing with depression
- Masculinity
- Self-efficacy
- Prevention
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Advocacy
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- Willing to speak to anyone
- Sharing prostate cancer journey
- Education advocacy
- Religiosity
- Information need
- Effects on family
- Faith
- Need for advocacy
- “Calling” to be an advocate
- Talking to family/sons
- Sharing experience with younger men
- Embracing advocacy
- Social support
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Study Interpretative Frameworks
The Good, The Bad and The Ugly (Figure 4). The qualitative methodologist led the team in developing emerging frameworks from the data. The experiences of the Black CaP survivors across the CaP care continuum were divided by the study scientific team and the study CAB into “the good” (e.g. timely diagnosis, excellent provider relationships, informed decision making, effective treatment, no decisional regret) and “the bad” (delayed diagnosis, poor provider relationships, inappropriate decision making, less effective treatment, decisional regrets). Results were presented at several community forums for validation where participants were presented with preliminary findings and asked to provide feedback to the team. At one of these events, a Black CaP survivor stated that while we know a lot about the “good” and the “bad” experiences, we did not know about the “ugly.” He defined “the ugly” as the fact that we know little about Black men who did not enroll in the study – men who may be the most vulnerable to health disparities due to lack of access to screening, physical debility, or death due to CaP. This construct was added to the overall experience model.
A Prostate Cancer Care and Survivorship (CaPCaS) model was created representing the trajectory of CaP prevention, screening, diagnosis, treatment, survivorship, and advocacy (See Figure 5). The contextual factors participants reflected on included the immigration patterns of Blacks, including the African diaspora, the construct of masculinity of Black men, and socio-demographic factors. The socio-demographic factors include age, marital status, educational status, employment and income. Each phase of the trajectory can be described in terms of the “the good and the bad,” that is contributing to satisfactory or unsatisfactory outcomes. CaP prevention and advocacy anchor each end of the process model, as these processes are in play but do not necessarily impact the experience of the disease directly.
Some of the unique themes that emerged for CaP prevention were the perception of limited awareness about CaP in the Black community and the need for public awareness/education. Other themes were the need for risk-reduction behavior, preventive lifestyle, health beliefs and cues for action. Participant 1086 described the importance of lifestyle, “It’s very important for us to eat better and to leave a lot of that sodas, and drink more water, okay? It’s very important for you to do that.” The importance of public awareness was mentioned by participant 355: “Until recently, I don’t think there are aware of it to be honest with you, but, um, recently more, um, of our daughters –sons and daughters – are more aware of it and it’s more publicized now…”. Another participant, P001, stated that “Black men as a whole need to become, uh, more aware of things that affect them primarily other than, uh, other races, prostate cancer being one of them”. Also found to be important was health beliefs:
“Well, the first thing that comes to one's mind when they hear the—the big letter C is that, "Oh, man. This is a journey. It's a journey that can either put you in the grave or it's a journey that you're just gonna have to fight vigorously, but your life is basically changed." And so I had to look at it—I'm a—as—as—if—if it's was gonna kill me, I gotta go down fightin' with it. But it does change your life”. [Participant 866]
“I think we—we really have a negative view of it, and then, too, even though it's negative, it's not something that's really taken seriously. Uh, I think, uh, cancer is a serious thing, but I don't think we take prostate cancer serious. When—when—when—when the doctor says you have a elevated PSA count or somethin' like, and—and it's, like, ‘Okay. So what?” [Participant 1881]
The factors that emerged for CaP advocacy included helping others, sharing experiences and embracing advocacy. A few of the men considered themselves as CaP advocates and expressed their willingness to share their personal CaP journey with other Black men. Some discussed their CaP diagnosis as a “calling to become a CaP advocate” and thus have embraced advocacy, especially by sharing information about the disease. Some of the men also brought up providing social support for newly diagnosed Black men:
“I’m not ashamed of it. I’m ready to discuss it anytime, anywhere because if that way helped them -- for that is another reason why I do this -- if that way helped them, that’s very good. So they don’t have to go through what I went through”. [Participant 355]
“I would consider myself an advocate because from personal experience, you know? It’s easier to talk to someone about something, but when your personal experience -- it really opens up for you because I’m not just talking about stuff that I read or heard people. It’s from personal experience, and that makes you, you know, makes it more legit”. [Participant 1261]
CaP screening was discussed in terms of Digital Rectal Exam (DRE) and Prostate-Specific Antigen (PSA) screening tests. The sub-themes that emerged for DRE were ‘unmanly’, ‘rape’, ‘overcoming DRE myth’ and ‘just something you have to do’ while the sub-themes that emerged for PSA were ‘limited access’, ‘routine’ and ‘not recommended’. In general, participants emphasized the importance of screening in their CaP journey.
“Please go get checked. But, um, I-I-I feel that it’s necessary, I mean, ‘cuz, again, if you don’t have those symptoms, then you won’t know like me. I didn’t have symptoms. My prostate wasn’t enlarged. Um, okay, my prostate wasn’t enlarged. Um, you know, I wa—I didn’t have no, you know, bleedin’ nowhere, none of that, none of the above, no-nothin’. So, you—gettin’ screened is very, very important so you’ll know.” [Participant 1086]
“I’m a bit confused, because there’s some recent literature that was made available to me that said that some scientists are now questioning the value of the PSA test and say really it’s not what it’s supposed to be. He got a false reading from it, so I don’t know. I’m just confused.” [Participant 2018]
“I was discussing with my mechanic, bending down for a doctor to stick their hand in your anus to feel it whether it’s smooth or it’s not rape … They just are examining you, your prostate, and if it is smooth then they don’t need to do anything, fine.” [Participant 355]
“In the beginning, I realized, you know, the screening portion, uh, it was scary. You know, all you hear is, when you hear the word prostate cancer you hear, uh, you didn’t hear white guys dying. You were hearing the Black man disease, or the blacks dying at a higher rate because of stats saying they’re not getting medical treatment, they’re getting diagnosis late, or they’re not adequate getting medical care. Those were the things I heard. Did I know anything about the disease? No. You just seen public service announcement: Black mens are dying from prostate cancer, you know, at a higher rate from their White counterparts.” [Participant 2039]
“Um, maybe it—maybe it's—again, because of the fact that we're just very reluctant—in ______ there's a lot of pride, so when you talk about goin' and somebody stickin' their—their finger in their rear end and so forth, it's—you know, those men are—they're so macho, they're not—they're—they're tryin' not to—to go there. Whereas, uh, in this country you're a little bit more educated and realize that this means life. And so I think that's what it is with the Caribbean islands, especially Jamaica. Um, those—those men down there are just a little bit too macho for their own good”. [Participant 866]
The role of physicians and wives as cue for screening action was also highlighted by participants. Additional themes were the importance of annual physical to facilitate screening, procrastination that delays screening, symptom interpretation and temporal orientation. On symptom interpretation, participant 1086 stated - “Also pay attention to, um, you-your-your go—your bathroom use, you know, how often you wakin’ up at night. Does it feel like you completin’ your urine, um, stuff like that? And-and if that PSA level is going up, then go get checked”. Temporal orientation [17,18] is defined as an individual’s perception of time as being in the past, present or future. Blacks have been noted to exhibit present temporal orientation. The implication in terms of health is that prevention and screening activities are limited when there are no symptoms.
“I basically ignored it for almost 8 years. I basically just ignored it because my life was normal. Doctor told me that my prostate was enlarged, but that was not a problem. I went on television and saw they had prostate pills so I ordered some of those thinking yeah take the pills and everything’s gonna be fine. And everything was fine! I was not sick. Didn’t feel any way ill. So my life was normal, there was nothing abnormal about my life except when I went to the restroom to urinate sometime and it was slow, but that was it I thought it was no big deal. So your PSA count is high? What does that really mean? It meant nothing to me because it was not affecting me in any way”. [Participant 1881]
“And the thing [the doctor] would tell me on the PSA, ‘Well, you—you need to check with urologist. You need to go ahead and have this checked out.’ And I would say, "Okay. I'll do it.’ Never—never did it. Never did it. I mean this went on for, like, two or three years. Just never went. No big deal. I mean I was havin' trouble urinatin' at times, uh, but it was—I thought it was no big—you know, it was nothin' to get alarmed about”. [Participant 1881]
For CaP diagnosis, the men’s discussion revolved around treatment decision and outcomes. The need to be comfortable with the physician at the time of diagnosis, emotional support, and time to reflect on diagnosis were key themes. A crucial point for all the men within the CaPCaS process is the Point of Prostate Cancer Diagnosis (PPCD) [19,20]. As part of the CaPCaS process, we found that Black men come to the PPCD with different emotions and different experiences. The different PPCD emotions include shock, hope, fear, resilience, need for immediate action, acceptance, religiosity / faith and the will to live. Additional factors identified at the PPCD were denial, cancer fatalism, disbelief, and thoughts about impact of disease on manhood. Participants also expressed the need to be comfortable with the physician, the need for a second opinion, the need for emotional support and the time to reflect on their diagnosis at the PPCD. Faith and the will to live emerged as coping mechanism during CaP diagnosis phase. Some of the comments by the men were:
[Biopsy scare, Participant 1086] “I mean, biopsy is tough. I’m gonna tell you right now. It’s-it’s a tough muster. It’s tough, but it was necessary”.
[Spirituality, Participant 1086] “I mean, um, it—put it in the hands of God, really, you know, and-and-and, um, let him lead you”.
[PPCD Support, Participant 2039] “And I found it is good to take someone with you who’s been through it, even if they sit there and don’t say nothing. That’s somebody who, when the doctor tell you, “You got cancer”… When they told me, I didn’t hear him. I didn’t hear him! My wife was in there when the man said cancer. Everything after that sentence I didn’t hear. So my point is, you take someone who’s going to hear what they say so they can repeat it to you when you get away and get your mind back and say ‘What did they say?’ They can repeat it to you because you’re gonna miss – I don’t care who you are. Once that doctor says ‘it came back positive and we gotta do this’, your mind goes everywhere except listening to what that cat say. And then when you finally listen, your mind is so screwed up on ‘am I gonna die? How bad is it? Are you gonna lose your friend?’”.
[Sharing diagnosis, Participant 2039] “On Christmas Day, I said ‘Mom, I got something to tell you’. All the family was here, so I said I got to tell the family. So I made an announcement that I was diagnosed with prostate cancer. They knew I had been sick, having some problems, but they did not know why. So I had – we was all at my house at the table and I told my mom, I said, ‘Mom, I got diagnosed with cancer, prostate cancer’ and -- you think the room go quiet, everybody go hush -- but then my brother -- he’s 2 years older than me -- he was here. He came to the table and said, ‘Mom, I got something to tell you’. Now you got to understand this was a festive occasion, but this was when all the nieces, nephews, brothers, sisters, wives, everybody here. Now he came to the table, ‘Mom, I got diagnosed too’. And when he dropped the bomb, it was more or less ‘I didn’t know you had it! I didn’t know you had it!’ And it goes back to this thing where we keep it all to ourselves, but he took the opportunity to share with the family. And the thing that made it all ironic -- I said it earlier and I’ll say it again -- we both went through it. We both was able to compare notes, you know. I didn’t really get into it because of him, but we talked, we passing in the wind. I’m at the treatment center in the morning, he got off of work, he in the evening.”
For the CaP treatment phase, the importance of information processing, help seeking, shared-decision making with a physician, support, perceived control, provider communication, positive outcomes and learning from the experience of other CaP patients/survivors emerged from the interview data. In addition, provider bias and adverse effects were identified. Participant 1086 justified his choice of surgery as “I just wanted it outta me. I wanted the cancer outta me” and he was “100 percent satisfied with my decision”. Trusting the physician was clearly expressed:
“I ain't got no family here in ____with me, so I 'pend on my—on my—my doctor, which I had ever since I had—I been going to this doctor ever since I’ve been for 15 years cuz, you know, you—you—you—you know, we close, and he always—you know, if somethin' come up, he always tell me, you know, "Let's go and check this out," or "Go—let's see what this is about" or—you know. And I go ahead and do it”. [Participant 798]
“The advantage of having home boy or home girl as your doctor— ...-is that you speak the same language. On weekend, you can go to their house and ask free questions which you don't pay for”. [Participant 355]
Another theme that came across clearly was the need for second opinion:
“Um, I was disappointed with the, um, original urologist who I went to see, um, primarily because after he diagnosed the cancer and—and told me, um, you know, the severity of—of—of how much it had spread, uh, he gave me only one option, and that was radical surgery. Um, when I asked him about other forms of treatment, he sort of dismissed the question, uh, and led me to believe that the only treatment that was available to me would be the radical surgery. Um, I didn't necessarily agree with that, and so—[clears throat]— I did some additional research, talked to some other urologists, um, and decided to actually change urologists, uh, to a different urologist, who would provide either type of treatment that I decided that I wanted. I decided, um, to go with radiation therapy and seed implant, uh, mainly because I felt that it would be the safest, uh, procedure, um, and have the least, um, negative effects, uh, on my life”. [Participant 449]
The decision-making process and outcomes were clear drivers of CaP treatment:
“You have to come to a decision …it is a life or death decision”. [Participant 1086]
“You are somewhat baffled -- I mean, here is something that you have not experienced before. You do want to make the right decision. Uh, the way I was set up was I had, uh, doctors from different areas of treatment to, uh, talk with me. There was a surgeon, there was an oncologist, and there was, uh, one other person that, uh, did uh… The urologist, yeah. So all of them will, uh, talk with you -- and of course, they have your history in front of them -- they will try to help you make the right decision. However, uh, Surgeon, of course, he’s promoting surgery, and, uh, the oncologist gives you other options. The final analysis is kind of left up to you depending on, uh, your family history or your state of health”. [Participant P001]
“You take anybody word that’s in a white coat. Now, I don’t take nobody word just from my experience -- not to say that I know everything. I’m saying by my experience on misdiagnosis, different side effects – it’s important when somebody tell me “now you got this,” I want to know how is this going to affect me down the road. Am I going to be better or am I going to be worse? If I’m going to be worse, then why am I doing this? When I don’t understand -- what I want people to understand is, when you don’t understand something, don’t leave the office like I did. I left the office in the first couple of years -- this is my fourth year -- the first two years, I just do whatever Joe Blow or Mary Ann say, I thought it was God. Now, in these last two years, I’m not taking it anymore. I’m’ asking the questions because the quality of life is what you want to know. How is my quality of life going to be better with the decision they say you need?” [Participant 2039]
Support and positive attitude were expressed as being helpful:
“I knew I had to have a positive attitude about this because it had been explain to me that the more positive I was, uh, the more successful our treatments would probably be, so I had to have a very positive attitude with what was going on with me”. [Participant P001]
“My family was involved with me through the entire process. I explained everything that was going on with me to them. And I was, uh, blessed enough to have a doctor—one of my daughters is, uh uh, has a doctor of pharmacy. She's a Pharm. D, and she was very helpful with me, uh, in explaining the process and telling me why they were doing this and why they did that and and the other. So, uh, family involvement was very important. I kept them involved, uh, in what was going on with me. However, I did not require them to transport me to and fro. Uh, I could do that on my own”. [Participant P001]
If there is one primary thing that is clear in the CaPCaS process, it is that “there is no stupid question”:
“One of the things that I found out now is it ain’t no stupid question. You ask and you ask and you ask till you get the answer. I found out they don’t like it, but I make it clear to them I don’t understand. Can you -- I have a tendency to tell the doctor “Can you talk down to my level and say it in English?” And they’ll laugh at it -- you make a joke of because one we have a tendency -- we don’t want to upset the doctor, we don’t want to offend the doctor, we don’t want to get a second opinion. Here’s the problem: it’s your damn health. You can’t worry about offending them. There’s only two options: they say “I don’t want to see you no more” or “I’m going to refer you to another doctor.” At the end of the day, you must ask those questions. If you don’t -- I repeat it again -- if you don’t understand something they saying, you raise your hand. “Excuse me sir, I know you done said that.” I say, “Help the old dog out. I don’t understand. Can you bring it down a little?” They be like, “Mr. So-and-so, you crazy.” I break it down to them. I understand -- I want to know how this will affect me. When I talk to someone in the street, I tell them you don’t want nobody to talk above you or act like they know everything. When I talk to my friends or church members, I tell them the same thing. When you go, I tell them what to ask, what I been through, don’t be afraid to ask no question because it ain’t no stupid question. The doctor may say, “I explained that two or three times.” You getting offended? This is a decision that can have very bad, uh, very bad decision on you and your family if you don’t make the right health decision”. [Participant 2039]
Post-treatment CaP survivorship generated a lot of discussion among the CaP Black survivors. CaP survivorship was discussed in terms of side effects and decisional regrets. One of the key themes that emerged is the need for lifestyle change in terms of secondary prevention. The men also discussed challenges they experienced during survivorship, including dealing with treatment side effects (such as impotency), continuous monitoring (especially for recurrence) and dealing with depression. Decisional regret was linked with unrealistic expectations provided by the physician.
“My physician told me, “Okay, 6 months to a year, you’ll be back to normal.” That’s what he told me. “6 months to a year, you’ll be back to normal.” He kept preaching that, he didn’t tell me anything different. He told me [emphasizes] 6 months to a year you’ll be back to normal.” So when I, when I went into surgery, I went into surgery with that in mind – “Hey doc, in 6 months to a year, you’ll be back to normal, okay, and you won’t have that problem.” [It’s] still ongoing. It’s almost 5 years, and it’s not back to normal”. [Participant 1881]
As expected, the adverse outcomes arising from treatments presented some challenges for the men during survivorship:
“Well, number one, you've always been in control of your toolbox. You know? So you're gonna have to learn how to walk all over again. And there's a 90 percent chance, I will tell you—they say 50/50. I will tell you a 90 percent time that it might not come back, and so you're gonna have to use—there's times when, you know, it would come back on its own. When we gonna have sex, it would go up on its own, but it doesn't sustain. Most of the time it would go up on its own, but it might not sustain. But one of the things that have helped us is the pump”. [Participant 866]
“Well, one of the side effects is that, uh, that the radiation, the constant radiation in that area tends to weaken certain muscles in that area, okay. So you have to be careful. When you—you have to make sure that when you—when you leave home that everything that you needed to have done before you left home, do it. You know”. [Participant 329]
“The incontinence—yes, it does weigh on you because, again, we're men, and we don't wanna go around knowin' that we have to be wearin' Pamper and all of that. Now get this. When I came out, they—the doctor said that I had to be out of work for six weeks. I had the bag on my leg and so forth or whatever, and after two weeks I went back to work with the Pamper. And the reason why is because, again, I ran a business and so forth, and I—I had to be there just to make sure that I had a business when I came back”. [Participant 866]
The need for helpful information on CaP survivorship as well as ability to connect with other Black men who have undergone the same experience were noted to be helpful in the survivorship phase.
Also crucial to understanding the CaPCaS process are the crosscutting factors identified by participants and listed at the bottom of the model. These factors emerged as themes across the CaP care continuum and include family history of cancer, information seeking, acculturation, locus of control, self-efficacy, conflicting interests, health literacy, knowledge, comprehension, access to care, patient-provider racial concordance, patient-provider relationship, spirituality, stigma, positivity and social support. It appeared that provider communication style (paternalistic versus shared decision-making) impacted participants’ relationship with their providers. The phenomenon of locus of control emerged multiple times as participants struggled with control while going through the process.
“After I was diagnosed and the treatment decision, it was in the beginning, it was left up to the doctors. You basically take they word on what you should do with your body. I didn’t have much input. I had guys that say you “need to do this, you need to go over here and do that” and what I’m saying is, today, now that I took control of what I think is best for me as far as treatment, it’s important to me -- I don’t know about everyone else, but it’s important to me -- I am making sure when someone say “we going to do this,” I’m asking the question, “Okay, if you do this, what is the success rate? If you do this, how is this going to give me a quality of life? Is this going to better off doing this procedure or am I going to be worse?” It’s very important in my life now to be able to ask those questions. I didn’t ask in the beginning. If I asked those questions in the beginning, I promise you I wouldn’t be going through half of the stuff I’m going through now. It was a lack of knowledge, not being able to have input or info”. [Participant 2039]
Also of primary concern is access to care, especially in terms of health insurance:
“And I think—but I was guided—I think I was led that way by—by options that were not viable, that were not given to me with the—once again, it was the policy beginning to lapse, not bein' renewed, not knowin' whether or not I'm gonna be able to get insurance to—to follow through on that. And so there's an urgency situation here as well. "I gotta get up under this before that policy lapse and get this done." [Participant 1881]