OBJECTIVE: The purpose of this study was to determine the knowledge and perceptions of Jamaican and Haitian men regarding prostate cancer. METHODS: A qualitative design was used and ethnographic accounts were collected. RESULTS: The Jamaican men were knowledgeable of the signs, symptoms, and risks for prostate cancer. They believed early detection was associated with positive outcomes. All of the Jamaican men had been screened within the past five years. The Haitian men were less knowledgeable, had more misconceptions than the Jamaican men, were less optimistic that prostate cancer could be cured, and were less likely to have been screened. CONCLUSIONS: While qualitative findings cannot be generalized, language and cultural differences appear to have a negative impact on the level of knowledge that Haitian men have regarding prostate cancer, and their perception of the severity and outcomes. These same factors hinder efforts to recruit Haitian men as research participants.
KEYWORDS: Health Care Seeking Behavior; Prostate Cancer.
Jamaican men, have the highest rate of prostate cancer in the world (304/100,000) (Glover et al., 1998). Due to the prevalence of infectious diseases, the life expectancy for men living in Haiti is only 49.7 years, with only 8.4% of the men expected to live past 60 years (World Health Organization [WHO], 2001a). For black men, the age-specific risk for prostate cancer increases at age 45 years (American Cancer Society [ACS], 2001a; American Urological Association [AUA], 2001). Therefore, few men living in Haiti survive into the years associated with increased risk, and the incidence of prostate cancer among black men living in Haiti is unknown. However, relocating from Haiti to the United States (US) extends life expectancy by 19 years (WHO, 2001b), thereby giving Haitian-born men living in the US the opportunity to experience age-related prostate changes.
The term “African-American” has been broadly used to describe all black people living in the US. Use of such sweeping categorization pays little regard to the existence of subcultures within the black community. There is much diversity within this broad population, and there are attributes of ethnicity that exceed the limitations of the definition of race. While members of the black race may share similar genetic characteristics, skin color cannot be equated with behavior (Kleier, 2003).
Identifying the perceptions of prostate cancer of African- American men is important, and interventions based on these perceptions would logically be effective for African-American men. However, it would be inappropriate to then build interventions for all black men based on findings from studies of African-American men.
Table 1 Characteristics of the Sample
PURPOSE OF THE STUDY
The purpose of this study was to determine the knowledge and perceptions of Jamaican and Haitian men living in South Florida regarding prostate cancer. Specifically, this study explored knowledge levels, cues which would cause health care seeking behavior, perceptions of susceptibility, perceptions of the severity of the effects of prostate cancer, barriers to having prostate examinations, and perceived benefits of such examinations. Knowledge included awareness of risk factors for developing prostate cancer, possible signs of prostate cancer, and the decade of life when prostate screening should commence (Price, Colvin, & Smith, 1993). Once barriers have been identified, practical and tailored interventions can be formulated to correct misconceptions and encourage prostate screening.
THEORETICAL FRAMEWORK
The Health Belief Model was developed as a means to explain and predict preventive health behavior. The concepts of the Health Belief Model as related to prostate cancer screening include (a) perceived susceptibility to prostate cancer, (b) perceived severity of having prostate cancer, (c) perceived benefits of being screened for prostate cancer, (d) perceived barriers to being screened for prostate cancer, (e) cues to action to seek screening for prostate cancer, and (f) self-efficacy, or the confidence in one’s ability to take action (ETR Associates, 2002; Rosenstock, 1974). According to this model, the likelihood that an individual will take action to prevent illness depends on the person’s perception that they are personally vulnerable to the condition, the consequences of the condition would be serious, the precautionary behavior effectively prevents the condition, and the benefits of reducing the threat of the condition exceed the costs of taking action (Redding, Rossi, Rossi, Velicer, & Proschaska, 2000). Modifying factors incorporated in the model include demographic variables and knowledge. Once an individual perceives a threat to his health and is cued to action and the perceived benefits outweigh the perceived barriers, the individual is likely to engage in the preventive health action.
LITERATURE REVIEW
Cognizant of the increased risk for prostate cancer among black males, there have been studies focused on determining which factors influence the health care seeking behavior of members of the African- American community (Boyd, Weinrich, Weinrich, & Norton, 2001; Florida Prostate Cancer Task Force, 2000; Moul, 2000; Price et al., 1993; Shelton, Weinrich, & Reynolds, 1999; Stallings et al., 2000; Thomas et al., 1999; US Department of Health and Human Services (DHHS), 2000; Weinrich, Reynolds, Tingen, & Star, 2000). However, few of these studies have discriminated for subculture and ethnic diversity within the total population of African-American men.
Only one study regarding the beliefs and health care seeking behavior of African- Caribbean immigrants living in the US was found. The New York Task Force on Immigrant Health (2001) used the focus group approach to assess the perceptions, knowledge, and attitudes of immigrant groups to cancer prevention, detection, and treatment. One focus group included 13 English-speaking Caribbean participants; three were males (28.1%). Of the 13 participants, six were age 40 or older (46.2%); the gender of these older participants was not reported. The 13 participants reported their country of origin as Jamaica (n = 2, 15.4%), St. Vincent (n = 5, 38.5%), Grenada (n = 1, 7.7%), Haiti (n = 1, 7.7%), and Trinidad and Tobago (n = 4, 30.8%). Although country of origin was reported, the race of the participants was not. It appears there may have been a racial mix since the report specified that concerns were expressed by “black Caribbeans” (p. 13). Participants attributed good health to nutritional intake and health maintenance including exercise, rest, and avoiding cigarettes. They indicated that the biggest impediment to access of health care resources was the inability to pay. It was noted that black Caribbeans expressed concern that they would receive bad news from doctors and therefore avoided health care visits. Overall, these participants had a basic understanding of the risk for cancer, although they equated the word with negative consequences.
The focus group which consisted of 20 Haitian individuals was equally under represented. Of the 20 participants, two (12.5%) were over the age of 40; neither the gender nor the race of these older participants was reported. The Haitian participants, too, believed that nutrition, exercise, rest, hygiene, and avoiding smoking and drinking were essential components of a healthy life style. However, the Haitians seemingly placed equal emphasis on non-physical components of health and illness. They connected attitude, self- discipline, and self-respect to a healthy state. They relied on being aware of their bodies to determine sickness, used prayer to prevent illness and/or injury, and utilized such natural remedies as medicinal teas as the initial step in illness treatment. The Haitian group was found to have substantially less accurate knowledge regarding cancer risk factors, prevention, detection, and treatment than the English-speaking Caribbean group. They equated cancer with death and attributed the cause of cancer to numerous products associated with industrialization and/or biological factors. Participants believed cancer could be treated but that treatment was painful and expensive treatment was reserved for the wealthy. They expressed doubt that cancer therapy was effective. They claimed to have regular medical screening for cancer but were unlikely to have followed up on the results of such tests for fear of receiving bad news. The men correctly identified the age at which the risk of prostate cancer increases; however, they relied on self-monitoring to detect symptoms of illness. Regarding the cause of prostate cancer, one man attributed it to “sitting on cool objects after long walks” (New York Task Force on Immigrant Health, 2001, p. 26).
Based on the findings of the New York Task Force on Immigrant Health (2001), it is evident that there is incomplete understanding of the knowledge and perceptions of prostate cancer among the immigrant populations examined. It is additionally clear that the participants in these studies lacked knowledge of prostate cancer and had misconceptions regarding the causes of the disease\. They did not participate in screening for early detection of the disease, and, when they did experience symptoms indicative of obstructive uropathy, they either did not recognize the significance of the symptoms or were reluctant to have them evaluated.
Table 1 Characteristics of the Sample
METHOD
This study mirrors work done by Price et al. (1993) to determine the perceptions of African American males regarding prostate cancer. A qualitative design was used, and ethnographic accounts were collected for the purpose of discovering concepts and relationships in raw data and then organizing these into themes that provided conceptual order and insight into the knowledge and perceptions regarding prostate cancer unique to Jamaican and Haitian men living in South Florida.
PROCEDURE
Data was collected at various sites in Broward County, Florida. According to the US Census Bureau (2000), Broward County had a total population of 1,623,018. There were 60,241 (4%) residents who reported to have been born in Jamaica, and 47,445 (3%) who reported to have been born in Haiti. It must be acknowledged that the numbers reported in the census are not reflective of the likely large number of undocumented immigrants living in the area. Sites were selected based on the likelihood of a high concentration of the target population, the availability of a private interview area, and permission from property managers.
Using convenience sampling, ethnically matched research assistants (RA) recruited 20 male volunteers (10 Jamaican and 10 Haitian) to respond to a structured, audio taped interview. Interviews were conducted in the participant’s language of choice. Selection criteria included self-identification as either Jamaican or Haitian and being aged 45 years and older.
Description of the Sample
The men in the Jamaican cohort were most receptive to participating in the study. Over approximately 20 hours, 19 men were approached, 10 of whom who met the inclusion criteria and agreed to participate. Men who refused to be interviewed did so because they did not feel comfortable with either the topic or going into the private room with the RA.
Recruitment of Haitian men was exceedingly difficult. Two RAs spent approximately 70 hours and approached 44 men before 10 agreed to be interviewed. Younger men were more inclined to participate than were older men. Some men said they were not interested in the subject, while others expressed a fear of learning about a problem they did not know they had. Three (30%) interviews were conducted in Haitian Creole and translated into English for analysis. Table 1 provides a detailed description of the characteristics of the sample.
Data Analysis
The interviews were transcribed and categorized by questions. Interpretation was based on themes which emerged from the data and were supported by select quotes. Descriptive data was entered into SPSS for Windows (1999) for quantitative analysis.
Trustworthiness of the Data
To maximize the trustworthiness of the data and enhance credibility, triangulation, member checks, and search for disconfirming evidence were incorporated into the data collection and analyses procedures. Data was collected at different sites on different days of the week and at different times of the day. The interviews were conducted by culturally matched RA who also participated in the analysis of the data. At the conclusion of each interview the RA engaged the participant in summarization of the points which had emerged from the interview and validated the RA’s impressions. In the process of analysis, the research team searched for data that seemed to be contrary to, or to be an alternative explanation to, an emerging theme. Efforts were made to explain those who had a minority view.
FINDINGS
Findings are discussed according to the concepts of the Health Belief Model and the themes identified within each construct. The modifying factor of “knowledge” was included in the inquiry.
A. THE JAMAICAN COHORT
Knowledge
The Jamaican men interviewed were impressively knowledgeable regarding prostate cancer. The majority (n = 6, 60%) had an idea of the location of the prostate gland and stated that it could impact on urinary flow. Two (20%) did not respond to the question, and two (20%) attributed the production of semen or process of ejaculation to the prostate gland. Nine men (90%) were aware prostate screening should begin sometime around the age of 40 years. When asked about the signs and symptoms of prostate cancer, six men (60%) mentioned urinary symptoms as dribbling of urine, urinary frequency, difficulty starting the stream and having to get up in the night to urinate; however, other symptoms mentioned included urinary burning and testicular pain, and three men (30%) stated that they had no idea of the signs and symptoms.
Perceived Susceptibility
Responses to questions regarding perceived susceptibility also showed the Jamaican men to be knowledgeable. Four (40%) stated that susceptibility increased with age starting at 40 years, and one man (10%) identified that being black increased the risk.
Three of the Jamaican men (30%) stated that they did not know the risk factors for prostate cancer. Of those who responded, three (30%) thought that dietary intake of fatty, greasy foods, red meat, alcohol, and caffeine was a major factor. One (10%) participant associated prostate cancer with extremes in sexual activity: “If you are overly sexually active, that could be a factor, and if you are not. I have heard both sides of it so I am not really sure.” One (10%) participant identified hereditary as a possible risk factor.
Regarding cause, seven of the Jamaican men (70%) said they did not know what caused prostate cancer. This line of inquiry led to speculation regarding the relationship between dietary intake, hereditary, and prostate cancer.
Perceived Severity
The men were asked what happened if a person had problems with the prostate gland. Two (20%) did not know what happened; seven (70%) identified urinary symptoms as frequency of urination, difficulty starting the urinary stream, and nocturia; and one (10%) associated prostate problems with a decline in sexual drive.
All participants agreed that prostate cancer could be a serious threat to health and could lead to death. Two (20%) participants simply said that the words prostate cancer brought to mind “death.””Because I just feel once its cancerous, don’t care the surgery, you don’t survive it.” But others were not so pessimistic. Four (40%) participants acknowledged that early detection and prompt treatment could be effective. One man said, “Just try to get rid of it; there are cures out there for it, like surgery, whatever, depends on the severity.” Another man clarified, “If caught early enough there should be help but if not, it could lead to death.” A third man elaborated, “I mean it doesn’t bound to be terminal but…if you catch it in time, they say you can be saved. But if it is not taken in time, it means death.”
Four men (40%) could not identify any problems associated with prostate cancer. Others identified pain and metastasis as problems. One (10%) participant mentioned issues of sexual dysfunction and resultant relationship problems, “If a person is married it could affect the function with their spouse.” While only one participant mentioned sexual problems directly, another participant hinted that sexual functioning could be affected, “Those are ‘well known’ problems (chuckle), you know what I’m saying?”
Perceived Benefits of Taking Action
The participants agreed that the benefit of having a prostate examination was “peace of mind,” early detection of prostate cancer, and the possibility of extension of life. “Just peace of mind that you don’t have cancer.””Benefit is you know if your body is functioning right, if your prostate is good. Give you peace of mind.””If you do have a problem then it might be taken in time. As the old saying goes, a stitch in time saves nine.”
Perceived Barriers to Taking Action
None of the participants identified any barrier to seeking a prostate examination. Indeed, all participants claimed to have been screened within the past five years.
Cues to Action
The symptoms that would motivate the participants to seek an evaluation of their prostate gland centered on urinary symptoms as nocturia, urinary frequency, urinary incontinence, and difficulty starting the urinary stream. Only one person (10%) was unable to state a symptom that would lead him to seek evaluation.
Sources of Information
The participants were asked how they usually got information about health and whose advice they usually followed regarding health care. Six of the Jamaican men (60%) stated they got health information from their doctor, and nine (90%) said they followed their doctor’s advice. Other sources of information included reading, television, and radio. The participants expressed appreciation for the patient/physician relationship and the desire to maintain privacy concerning health matters, “With males, when you have a problem, you don’t go about spreading it. No one needs to know about it but the doctor.”
B. THE HAITIAN COHORT
Knowledge
The Haitian men interviewed were less knowledgeable regarding the prostate gland and prostate cancer. When asked where the prostate gland was located and what it did, five men (50%) were unable to respond, four (40%) had an idea where the gland was located and that it could impact on urinary flow, and one (10%) believed it produced sperm. Eight (80%) stated that prostate screening should begin sometime around age of 40 to 50 years; however, one (10%) thought screening should begin in the mid-30s, and one (10%) did not know. As for the signs and symptoms of prostate cancer, seven (70%) mentioned urinary symptoms as difficulty urinating, bleeding with urination, urinary retention, and urinary frequency. One man stated “If I walk a mile or two, I feel lik\e going to the bathroom.” Three (30%) stated that they did not know the symptoms of prostate cancer.
Perceived Susceptibility
Three of the Haitian men (30%) stated that susceptibility increased with age starting at 40 to 60 years, and one (10%) stated that being black increased the risk of prostate cancer. Seven (70%) were unable to identify any risk factors for prostate cancer, one (10%) stated that age was an important risk factor; two (20%) connected increased risk with dietary intake high in “grease” and “improper” sexual activities. Only one (10%) ventured to identify a cause of prostate cancer; he believed that if a young man had untreated gonorrhea, it would lead to a chronic problem.
Perceived Severity
The Haitian men were not highly verbal when asked questions to determine their perception of the severity of prostate cancer. Their responses were short and to the point. Terms equated with the words “prostate cancer” were: scary, uncomfortable, very bad, and death. Early detection was associated with a more positive outcome, but only one man (10%) thought that prostate cancer was a potentially curable disease. Problems associated with prostate cancer focused on urinary symptoms (40%) and sexual dysfunction (30%). Three (30%) stated they did not know what problems were associated with prostate cancer.
Perceived Benefits of Taking Action
The benefits of having a prostate exam were identified by four (40%) as “knowing where you stand” and “not wondering whether you have a problem or not.” Four (40%) identified early detection as the primary benefit, “The sooner…you check, the better it’s gonna be. Like that you might cure the problem.” One (10%) participant did not identify any benefits, and one (10%) thought that screening would help solve infertility problems.
Perceived Barriers to Taking Action
Five (50%) of the Haitian men said that embarrassment and the pain/discomfort of a digital rectal examination were primary barriers to seeking screening. One man (10%) said that he was afraid to know. Four men (40%) said there were no reasons they would not be screened for prostate cancer.
Cues to Action
Seven of the Haitian men (70%) identified urinary symptoms as cues that would cause them to seek an evaluation of their prostate. “Any problem with urination, like pain, or if I see any blood…would…motivate me to see a doctor.” Three (30%) did not identify any cues; one of these men said, “You don’t need symptoms to seek an evaluation….You’re supposed to have your prostate checked every year.”
Sources of Information
Physicians and nurses were overwhelmingly identified as sources of information by the Haitian participants. They viewed these providers as knowledgeable and responsible. “One of the ways that I usually…I mean, the easiest way is for me to talk to my nurse…she provides me usually with good information, reliable information. And if she has doubt, I go to my doctor.” Besides healthcare professionals, the Haitian participants relied heavily on their personal experience of their bodies. One man said, “I listen to my body.””I listen to myself.”
DISCUSSION
Jamaican men in this sample were well aware of the signs and symptoms of prostate cancer despite a misconception that the prostate gland was involved in fertility and sexual function. The majority knew the risk factors for prostate cancer. The group was polarized with respect to the severity of prostate cancer. They believed that early detection was beneficial, and all Jamaican participants claimed to have been examined within the past five years.
Haitian men were less aware of the signs and symptoms, and there was a more pervasive perception that problems with the prostate gland were directly tied to sexual function and indiscretion. While Haitian men thought that screening was useful for early detection, they were less optimistic that the outcome would be positive. Embarrassment and discomfort were primary barriers to being screened. Although urinary symptoms were identified as cues to action, they also relied on self-awareness. Fewer of the Haitian men than the Jamaican men had ever been screened for prostate cancer, and those who had been screened were screened less recently. Of the five that had never been screened, two were interviewed in the Haitian Creole language.
None of the men in either group identified transportation or financial difficulties as barriers to being screened. Neither did they attribute prostate cancer to supernatural causes or violation of religious mores or natural laws. Both groups strongly identified physicians and nurses as their primary resource for healthcare information and indicated they would follow their advice in these matters.
The findings of this study point to the isolating effect that subcultures experience from an inability to use the dominate language of an area. English is the official language in Jamaica. Jamaicans have more easily assimilated into the American culture, are more knowledgeable regarding prostate cancer and, to some degree, ascribe to American values associated with healthcare. The official language in Haiti is French; however, not all Haitians are literate in French. Most Haitians speak Haitian Creole but are unable to read it (Colin & Paperwalla, 1998). Haitian men are less knowledgeable regarding prostate cancer, are less likely to have been screened for prostate cancer, and are more likely to retain traditional beliefs regarding healthcare practices. They repel intrusion into their personal lives, particularly in areas they believe are connected to reproductive and sexual function.
IMPLICATIONS
It is undeniable that there is disparity in the healthcare outcomes for members of sub-cultural groups in the US. Agencies such as the ACS (2001b) and the US Department of Health and Human Services (2000) have mandated that this disparity be narrowed and actively support methods by which this can be accomplished. However, for interventions to be worthwhile, they must be congruent with the healthcare beliefs, values, and practices of the particular subcultures.
Both Jamaican and Haitian men report that they rely on physicians and nurses for healthcare information and guidance. However, engagement with these providers is limited if these men only present for episodic illness. Indeed, prostate cancer is likely to be advanced by the time symptoms occur. Nurses are in an excellent position to maximize on opportunities to provide Healthcare education, correct misconceptions, and encourage Healthcare maintenance.
There is a need for Healthcare educational materials to be developed in both written and oral Haitian Creole. This material should be available at community locations frequented by men. The presentational design of such materials should be reflective of the private and personal nature of the problem.
FUTURE RESEARCH
Qualitative studies are limited in that they typically involve very small samples and the results cannot be generalized. Language and receptiveness limit the ability to carry out qualitative research involving the Haitian community. Haitian men are reluctant to be interviewed on a face-to-face basis and provide narrative- type data. Data must be collected in the participant’s language of choice then French or Haitian Creole data must be translated into English for analysis. There is a need for transcultural adaptation of appropriate research instruments so that quantitative data can be collected from larger samples while allowing anonymous participation.
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Jo Ann Kleier, EdD, PhD, ARPN, CURN
Jo Ann Kleier, EdD, PhD ARNP, CURN, Associate Professor, Barry University School of Nursing, Miami Shores, Florida.
Copyright Riley Publications, Inc. Center for the Study of Multiculturalism and Health Fall 2004
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