How African American Men decide Whether or Not to Get Prostate Cancer Screening

Abstract

Prostate cancer is the most commonly diagnosed cancer in men in the U.S. and affects African Americans disproportionately when compared to other ethnic groups. There are unclear reasons for this disparity, but several factors may include race, nutrition, family history of cancer, and screening. With early detection of prostate cancer, survival is much better; thus screening may be helpful, especially for high-risk individuals. Prostate cancer screening continues to be controversial. A paucity of data exist on what prostate cancer screening means to African Americans, particularly in rural areas, and how they make the decision to undergo prostate cancer screening or not. This study interviewed 17 African American men to explore how and when they decided about prostate cancer screening.

The majority of the men (n = 9) said that they had prostate cancer screening. Three themes emerged from the data: 1) these men had information on prostate cancer; 2) family and friends played an important role in the men’s decision-making process; and 3) for screening, it was necessary for the men to have a trusting relationship with their healthcare provider.

These findings confirm that the decision-making process is not a simple process. The study’s results can help healthcare providers understand some of the important decision-making factors in prostate cancer screening for African American men.

Prostate cancer is the most commonly diagnosed cancer in men and the second leading cause of cancer deaths among men in the United States, following lung cancer. The American Cancer Society ¹ has estimated that 186,320 men in the U.S. will be newly diagnosed with prostate cancer in the U.S. during 2008 and the cancer will kill 28,660 men. Prostate cancer affects African American men disproportionately: they have the highest incidence of prostate cancer, at 248.5 cases per 100,000 compared to 156.7 cases per 100,000 Caucasian men and 138.0 cases per 100,000 Hispanic men ². African Americans are also more likely to be diagnosed with a neoplasm that has spread beyond the immediate adjacent organs or tissues and have tumors metastasized to distant lymph nodes.

The U.S. Preventive Services Task Force (USPSTF) has concluded that the evidence is insufficient to recommend for or against routine screening for prostate cancer. Although screening has not been shown to directly decrease mortality, it offers the only possibility for early detection of prostate cancer. Early detection is particularly important for high-risk individuals such as African Americans and individuals with a first-degree relative (i.e., father, brother) who have had prostate cancer.

Potential Explanations for Increased Prostate Cancer Risk in African Americans

Reasons for increased prostate cancer mortality among African American men are unclear. Individuals, particularly African Americans, who have limited finances and education are likely to be unable to obtain and pay for adequate healthcare services, which may increase mortality risk ^3–7. In addition, many African Americans distrust healthcare providers because of unequal healthcare access and experiences ⁸, and past research such as the Tuskegee syphilis study, in which African American men with syphilis were denied treatment ⁹. Numerous organizations and agencies, including the U.S. Department of Health and Human Services (DHHS), have reported that minority groups are less likely than whites to seek preventive care or make return medical visits ¹⁰. Yet one of the most significant potential risk factors for African Americans with chronic illnesses, such as cancer, may be due to their cultural beliefs.

Several studies have found that African Americans who are high in cultural mistrust tend to have more negative views and expectations of white healthcare providers than others who see the same healthcare providers ^11–14. For instance, Sussman and colleagues ¹⁴ conducted a psychiatric epidemiologic survey of 3004 households to determine differences among African American and white Americans in their determination to seek treatment for depression and to identify the groups that were least likely to seek care. The investigators found that African Americans were less likely to seek professional healthcare, even when there was little evidence that fear of being stigmatized prevented health-seeking behaviors. This study found that African Americans were more likely to seek informal health advice from family members, friends, community centers, and churches. African Americans, like other minority groups, sometimes do not feel comfortable speaking with healthcare providers who do not “look like them” ¹⁵. African Americans’ low participation in prostate cancer screenings and screenings in general may be related to feelings of distrust and fear in the African American community. Eisler and Hersen ¹³ suggest therefore that to increase health-seeking behaviors among African Americans, more attention needs to be paid to cultural differences, and public agencies need to try to develop an atmosphere more open to diversity.

Myths and Misperceptions

Lack of prostate health knowledge also contributes to increased risk of prostate cancer mortality for African Americans. Often, what is known is distorted by myths and misperceptions. Richardson et al. ¹⁶ conducted focus groups with asymptomatic low-income African American men to examine the myths African Americans from low socioeconomic backgrounds held regarding prostate cancer. The investigators found that these African Americans did not perceive themselves as at high risk for prostate cancer unless a close relative had the disease. The men were unaware of the relationship between race and the incidence of prostate cancer or the relationship between age and the onset of prostate cancer. Participants were also surprised that prostate cancer could be asymptomatic. Richardson ¹⁶ also found that some of the men believed prostate cancer screening involved a tube being inserted into the rectum to collect saliva. Finally, some in the sample believed that surgery (orchiectomy) was the only option for treatment and it would inevitably result in impotence. Similarly, Lange and Adamec ¹⁷ found that many men thought only the elderly could get prostate cancer and the cancer was always symptomatic. Saltus ¹⁸ found that some thought stress caused cancer, and positive thinking would cure the disease. These data suggest that there is a great need for men to be correctly informed about prostate health and procedures/testing.

Health-seeking Behaviors among Rural African American Men

Even though prostate cancer is a significant problem for African American men, few studies have focused directly on rural African American men’s decision-making or views that may keep them from receiving testing. A few studies have identified barriers to undergoing prostate screening exams for African American men including distrust, poverty, lack of knowledge, low social standing, fear of possible hospitalization and negative attitudes toward white healthcare providers ^{3, 4, 19}. There may be other reasons as well. For instance, Mcdougall and colleagues ²⁰ had 19 African American men complete a prostate cancer screening questionnaire to examine perceived barriers to screening. The researchers found that barriers to prostate cancer screening by African American men included personal beliefs such as lower value placed on health, as well as inadequate time, lack of money, and fear of test results. Although one limitation to this study was the small sample size, it revealed other possible explanations to the problem. Some men may avoid involving their closest family members and friends in cancer screening and treatment decisions because of shame, guilt, and fear. Some males may not feel comfortable talking about their situation with relatives and friends although they may feel more relaxed when speaking with other men who have gone through similar experiences. There is some evidence that African Americans who have strong social support and pleasant experiences with healthcare providers are more likely to express commitment to their health and follow-up appointments than those who do not feel supported by providers ²¹. One study ²¹ that examined factors associated with the intention to obtain prostate cancer screening among 154 African American men found a positive association between prostate cancer screening intention and strong social support and a trusting healthcare provider-patient relationship.

It has been noted that individuals, particularly low income African Americans, who live in rural communities in the Southern regions of the U.S. have less access to healthcare screenings than their urban counterparts. In this current study’s catchment area, central rural Virginia, several hospitals and agencies provide free prostate cancer screenings at least once a year, and there other opportunities to obtain prostate cancer screenings. Usually these free screenings occur near or at major medical centers, such as the University of Virginia Medical Center. Also, Virginia is one of the states that have enacted laws requiring insurers to include coverage for prostate cancer screenings. However, in rural areas, individuals may not be aware of free prostate cancer screenings or it may be difficult to get to a screening because of distance; further, individuals may not be aware of the risk of prostate cancer. There is little information on what prostate cancer screening means to rural African American men and why they do or do not participate in screening. This study therefore examined the meaning of prostate cancer screening for rural African American men. Understanding African American men’s beliefs about prostate screening may lead to more effective interventions to get these men into screening earlier and possibly decrease mortality in this population.

Methods

A qualitative research design was used to explore rural African American men’s experiences in decision-making regarding prostate cancer screening. A hermeneutic phenomenological approach ²² was used to analyze the data. This method incorporates interpreting text in context to explore, interpret, and describe areas of experience that are complex and not fully understood. Specifically, the participants are encouraged to communicate their experiences in narrative form and explain the situations in which events happened as well as the meanings the participants found in their experiences. Participants were asked to talk about how they decided whether or not to be screened for prostate cancer. The data from individual narratives about deciding to have or not to have prostate cancer screening were first analyzed to understand the individual meanings ascribed by the participants. Subsequently, the data from all the narratives together were examined, grouped and categorized based on common relationships, ideas, beliefs, and options. Finally, the data analysis was an explanation and depiction of their decisions about prostate cancer screening.

Recruitment and Data Collection

African American men were recruited from barbershops, churches, community health centers, radio stations that African Americans listen to, and recreational centers in rural localities. The decision to recruit from these areas was based onthe authors’ previous research experiences ²³ with the African American community, particularly African American men, and on conversations with African American community leaders. It has also been reported elsewhere ²⁴ that when investigators place a high value on the importance of including ethnic/racial minority populations in research, they have more success in recruiting minorities. Several proprietors of barbershops and convenience stores, administrators of free clinic health departments, and church ministers were open to the idea of allowing flyers and announcements and recruiting individuals for the research. Participants met the following criteria: (a) ≥ 40 years old, (b) self-reported as an African American male, (c) never been diagnosed with prostate cancer, (d) and able to provide informed consent. Interested men contacted the first author, and a time and location convenient for the participant were established to check eligibility and conduct the interview. The University of Virginia’s Institutional Review Board for Social and Behavioral Sciences approved the study.

A total of 17 men were interviewed. The men were informed that they would receive $30 for participating in the interviews. A consent form was completed by the participant before the interview began. Individuals generally feel more comfortable talking about their health beliefs, attitudes, and practices when they are in a setting in which they do not feel threatened ²⁵. Therefore one-on-one interviews were conducted in private rooms of public libraries, in participants’ homes, or in other non-intimidating settings that were convenient to the participants.

A semi-structured interview guide that included both closed and open-ended questions were used with each participant. The interview guide was initially created by one of the authors (R.J.), and then was revised and adapted by the other two authors (R.S. and I.W.) into a format to assist participants in understanding the questions. The interview focused on understanding how rural African American men decide whether or not to get prostate screening. The questions generated discussion that led to richer information on participants’ facilitators and barriers to screening, the role these played in their healthcare, feelings toward healthcare providers, and their perceptions about prostate cancer screening. The questions asked included: “What are your thoughts or feelings about having health screenings for disease?” A follow-up question was, “Who or what was involved in making a decision to have or not to have your prostate checked?” Another question was, “How do the words ‘prostate cancer’ make you feel?” In addition, sociodemographic data (i.e., annual household income, type of insurance coverage, and highest level of education) were obtained.

Analysis

Participants’ responses during the interview were audiotaped, and their nonverbal behaviors were observed and written down as field notes. Interviews typically lasted between 1 and 1.5 hours. All interviews were transcribed and analyzed using a qualitative method focusing on understanding the meaning of participants’ experiences ²². All notes from the observation/field notes, interview transcripts, audio recordings of interviews, and demographic forms were organized, coded, and placed in categories using a qualitative software program called NVivo®, which permits systematic thematic coding of digitized audio data. The transcripts were then analyzed to examine commonalities within the codes. Themes were generated from these commonalities and categories. “Thick descriptions” were captured from the interviews to gain meaning of participants’ experiences ²¹. Thick descriptions refer to the manner in which data is converted into a comprehensive and detailed description to build an analytical explanation on what is occurring. The authors carefully examined the narratives using an iterative approach to enhance our understanding of the beliefs and attitudes of participants toward prostate cancer screening. This iterative comparative analysis involved constantly revisiting the data/narratives until no new themes emerged. The rigorous iterative comparative analysis was continued until saturation of the data was reached ²⁶ at a sample of 17. After initial analysis by the first author, each member of the research team examined the themes to further refine the analyses and make sure the themes accurately reflected the narratives.

Findings

Participants’ ages ranged from 40 to 71 years, with a mean of 52 years (standard deviation = 10). Only six of the participants were high school graduates. Twelve had yearly incomes between $1000 and $30,000 and had private insurance. Seven were married, and seven were single. The majority of the men (n=12 [70.6%]) were employed. Demographic data can be found in Table 1.

Table 1.

Sample (n=17) Demographic

	Range	Mean
Age	40 years to 71 years	52.2 years
Education (years)	≤ 6 to ≥18	High School Graduate
Annual Income	≤ $10,000 to ≥ $70,000	$20,001 to $30,000
CATEGORIES	n	%
PROSTATE CANCER SCREENING STATUS
Yes	9	52.9
No	6	35.3
Not Sure	2	11.8
MARITAL STATUS
Married	7	41.2
Divorced	3	17.6
Single	7	41.2
OCCUPATION STATUS
Employed	12	70.6
Retired	4	23.5
Disability	1	5.9
INSURANCE TYPE
Uninsured	3	17.6
Public (Medicare/Medicaid)	5	29.4
Private Insurance	8	47.1

The major themes were (1) limited education about prostate cancer; (2) family involvement; and (3) the necessity for trust in healthcare providers.

Limited Education about Prostate Cancer

During the interviews, limited education about prostate cancer was evident. The majority of participants, particularly men with less than a high school education, did not know much about prostate cancer and said they would like more information about the disease. The men desired more information about risks for prostate cancer, screening recommendations, and potential treatment side effects. Several men said that they had heard about prostate cancer and knew that it could affect their sexual capabilities, but they were not aware that African Americans were at high risk of prostate cancer or that they could die from it. For example, when asked the question, “Are there certain ethnic groups that are more prone to get prostate cancer?” one participant with less than a high school graduate education said:

Well, I’m going to be truthful, that’s a hard question to answer. I cannot answer that. I think all races should be about the same.

Another participant responded, “No, I would not know that, no, I could not answer that.” Participants who had at least a high school degree had more knowledge of prostate cancer. One of these participants said,

Well, all I know is that if it [prostate cancer] is caught early that it can be prevented, but if it goes outside of the prostate wall, they say, then there is a problem. So, I don’t know a whole lot about it other than just if it is caught early, it can be a whole lot better for you, you know…and [also] side effects, that’s basically it…they call it impotence…you cannot do 90, I mean it could fool your sex life there you know and you can’t build an erection.

Family Involvement

The importance of family involvement was another theme that emerged from the data. The majority of the men said that having a member of the family involved with health decisions, such as prostate cancer screening, was important to them. The majority trusted their relatives and believed that their family members wanted the men’s health to be good. It has been noted elsewhere that African Americans, are more likely to seek health advice from informal sources, such as family members ¹⁴. These men’s relatives helped them place health concerns as a priority. One man said,

She [wife] was in the physician assistant program for awhile, so she played into it…. She does all of her screening and all you know, so she will get behind me every now and then. I feel like I am not doing the best now in getting screened, but I would do even worse than I am now if she didn’t actually push like that.

Another man stressed that his sister and daughter played an important part in his decision to have prostate cancer screening because they revealed that his brother had prostate cancer; and therefore, he should get screened. The man thought his susceptibility to prostate cancer was low, but after hearing that his brother had the cancer, his perception changed. He said,

Getting a prostate cancer screening never even fazed me actually. I guess I was running the streets too hard or whatever. It [prostate cancer screening] was the only thing I could think about when my sister called me and told me about my brother. My sister and daughter said “You better go and get tested, your brother has got prostate cancer. Even though he is not dying of it, he still got it.”

One man reported that his wife and sister helped him make the decision to get screened by using e-mail. He said,

My wife is involved in the total package of helping me decide to be screened… I have got my sister who will e-mail me [and my other sisters] some breast cancer information. The females are being affected by that. She will send an e-mail saying “Have you all went? You know I just got mine.”

Although numerous individuals said their family members were supportive of screening and helped them make decisions about health concerns, several participants said that their family members did not go to see a physician or other healthcare provider routinely. Reasons included lack of money to pay for healthcare visits, lack of transportation, and the amount of time it took to get to a healthcare provider. One man said,

I am not a person who gets check ups (annual physical exam), and my family is somewhat like I am describing. I am not going unless I have got to go. I mean unless they find something that is wrong with them…but until they find something wrong, they are not going. I guess it’s just a family thing… You know unless something goes wrong, you are not going to pay money, just to go down there and get busy [waiting at doctor’s office]. That’s how I grew up and probably why the check up thing is not happening with me.

Another participant spoke about the attitude of his brother:

Sometimes if someone is not feeling well or something, they will go to get a physical. Myself, I will at least try to get it [annual physical exam], but if you tell it to my brother, he might just put it off, saying “Yeah, I am going to do this and I’m going to do that,” but he never will do it… I have never mentioned to my brother that I had prostate cancer screening because it never comes up.

One man noted that a family member, such as a wife, who was very close and understood the man’s needs, could be essential to meeting health needs. He said,

If a man has a wife, she talks about it [physical exam screenings]. Years ago when I was married, I used to make sure that my son’s mom guarded her exams [physical exam screenings]…I not only talked to her about going to the doctor, but I would take her to the appointments. So now it has come to me that it was not only a family member thing or that you know your mate, but we were like friends. Once you are married to your friend, you can talk about anything. So now, I don’t have that, so I’m quite sure that is why I am not going to my prostate exams regularly.

The Necessity of Trust in Healthcare Providers

Trust in the patient-healthcare provider interaction was an important factor in whether or not the men decided to obtain prostate cancer screening. The men noted the importance of having good rapport with physicians and other healthcare providers, and majority said that they trusted their primary physicians. Many said that if a physician had recommended them to get prostate cancer screening, they would have done it. Some men who had initially gone to their physician for something other than prostate cancer screening were told by their physician to get the screening while in the office and did so at that moment. When the researcher asked one participant how he decided that he would get prostate cancer screening done, the participant said,

I was not really thinking about prostate cancer screening. My relatives had prostate cancer. I am going forward with it [prostate cancer screening]. After talking to my doctor, he encouraged it, and I went to a doctor. My family encouraged it and because of my family history, I shared this with my doctor, and of course he, you know, said that we will do it [have a prostate cancer screening done].

Several previous studies ^{27, 28} have found that race is an important factor in trust between the patient and healthcare provider, particularly among African Americans, who have tended to be less satisfied with physician visits than Whites. In this study, the race of the healthcare provider was not a major factor in whether or not the patient trusted the physician. A trusting patient-healthcare provider relationship appeared to be based on how long the relationship had lasted and whether the healthcare provider seemed sincere about helping his patient. When one participant was asked whether the color of the physician mattered to him, he said,

It depends on the doctor and patient relationship. Like my doctor, he has been my doctor since I was six years old. Now, if he refers me to another doctor, I will be comfortable because I trust him.

Another man said,

I think if you go to the health center today, I figure they [healthcare providers] try to help everybody. They will try to tell you what you are [susceptible] to. You know, we are black people, and we get this [prostate cancer], and white people, they get leukemia. But I just think they try to help us all. When I go to the doctor, I do not figure there is discrimination about health services, as far as him being a white doctor. So I have no problem with it. I don’t think there is discrimination. I think they try to do the best they can with everyone, regardless of their age, race, or whatever. I believe that is how most of the doctors and staff are, personally. I have never had problems with doctors or health care. So, I cannot say anything bad about them.

One other participant said,

No, it does not matter [what the race of the doctor is]…Most of my doctors were white.

Discussion and Study Limitations

A number of the participants, particularly the seven married men, reported that family involvement played an important part in their decision making process. Other studies ^{29, 30} have also found that spouses played a major part in gathering information and advising on healthcare, and family members were key individuals in the decision-making process in the African American community. The men in this study took in to consideration their family’s and friends’ advice when deciding whether to have or not to have prostate cancer screening.

Yet the majority of these men had limited information about prostate cancer. Many believed that they were not well informed about the disease by healthcare providers and thought that more education about prostate cancer was needed for the public, and particularly for individuals at high risk. However, participants also thought that their physicians played an important role through information and recommendations on whether to have prostate cancer screening. Further, participants’ decision to have prostate cancer screening was based in part on their trust in healthcare providers.

The limited amount of information the participants (particularly those with less than a high school education) had about prostate cancer is consistent with others. These men were not aware that African Americans are at higher risk for prostate cancer and mortality than other races. Lack of knowledge about the disease may have led in the individuals to believe that they were not susceptible to this potentially serious disease.

The men’s decision making process appeared to be related to the amount of information they had and their trust in family and in healthcare providers. The majority of the men said that they trusted their primary health provider, which differs from some previous studies, revealed high mistrust of healthcare providers among African Americans. This may be explained by the fact that some of these men had a long relationship with their provider, and over time, a trusting relationship had matured. The men believed that with adequate information about the disease and trust in their healthcare provider, they could make a good decision. A study that separated patient’s desire to gain additional information about their medical condition versus taking an active role in making the actual decision, it was found that more patients preferred more information than to take the active role in making the decision ³¹. Interestingly, a study that focused on trust and its effect on decision-making, most of the respondents with higher trust in healthcare providers desired a more passive role in decision-making than individuals with lower levels of trust ³².

Although there are numerous resources available now for cancer prevention and detection, many African American males still do not receive prostate cancer screening ³³. If we are to increase the number of men who are diagnosed early, we must understand how men make decisions about prostate cancer screening. To date, however, few researchers have examined decision-making about screening by minority men, who are at higher risk for prostate cancer. Cultural beliefs and previous experiences appear to be important determinants of cancer outcomes and they may play a role in when the diagnosis is made in African American men.

This study provides beginning information on their decision-making. However, the majority of the sample came from individuals who reside in central rural Virginia, they may not be representative of the rural population throughout the United States. Another limitation may be related to self-selection. The participants agreed to be interviewed and were interested in the study and screening. This is still a lack of information on individuals who are not interested in prostate cancer screening. Future studies may want to examine groups of men who lack interest in screening to gain their perspective and experiences with decision-making about prostate cancer screening. The study’s sample characteristics may also be a limitation to this study due to the majority of the sample being employed, having some type of insurance, and having had a prostate cancer screening before. Future studies of decision-making need to be expanded to different cultures, ethnicities, and geographic locations to ensure more generalizable representation.

Conclusion and Implications

Nevertheless, the themes that emerged from this study appear to have a significant impact on the decision-making of African Americans in relation to prostate cancer screening. It is important to recognize that healthcare decisions may not be easy to make, particularly when individuals do not have sufficient knowledge about the issues, a support system to assist them, or trust in healthcare providers. African American men tend to be reluctant to seek health care until a disease has progressed ³⁴. It is important for healthcare providers to be aware of these patients’ needs, to include family members and/or friends in the decision-making process, and provide patients with adequate information and resources to help them make a decision. Open communication among family members and friends who are familiar to the patient’s daily life activities may assist the patient in deciding to have prostate cancer screening. Culture plays an important part in the decision-making process. Individuals’ behaviors are formed and matured by beliefs, values, and attitudes they have obtained while growing up in a particular culture; therefore, cultural values may influence how individuals process and make decisions ³⁵. Feldman-Steward et al. ³⁶ developed a decision aid that was cognitively based which presented information about localized prostate cancer and helped individuals weigh attributes that would ultimately aid in making healthcare decisions. The findings of this study can assist healthcare providers in developing tailored health plans and decision aids for specific populations.

Healthcare providers should also implement a welcoming clinical environment and discuss screening/medical options in a manner that will build trusting relationships between the patient and the provider. Innovative interventions that can improve patients’ (particularly African American men’s) health knowledge, increase the inclusion of family and friends in decision-making, and build relationships with healthcare providers are needed.

The men who participated in this study said that the study was important and they valued the opportunity to speak openly about their experiences in deciding to obtain prostate cancer screening. Many participants felt the study allowed them to express their thoughts and feelings about healthcare in a way that they did not normally get a chance to ²³. They appreciated the fact that the researchers were willing to listen to them and said that the information they gave would help others in the future.