Prostate cancer risk factors, care utilization and policy options. Focus group findings from an engagement with an African American urban community.
|Abstract:||This paper presents the findings of a focus group organized in collaboration with the African American urban community of GeorgeTown in Jackson Mississippi. The goal of the study is to identify and understand knowledge of prostate cancer risk factors and symptoms, utilization of existing prevention resources; and health education strategies. In addition, the study seeks to identify health education strategies and policy preferences that could be used in health promotion program development and policy advocacy framing. Findings of gaps in knowledge; low levels of service utilization; and the role of technology in limiting access to health information in the African American community are consistent with findings in other prostate cancer studies. However, some refreshing information regarding utilization, as well as health education and policy emerges from this study. The study painted a three dimensional profile of people who utilize prostate cancer screening services in the community. These are survivors who are enrolled in a prevention group, and have access to a supportive provider environment. There were also surprising reservations about the church as an outlet for prostate cancer health promotion because of discomfort with the topic in churches. Concrete prostate cancer related public policy options are proposed by participants including progressive policy options such as mandatory screening and referral regardless of financial qualification; free screening in emergency rooms; and conservative policy remedies such as tax breaks for facilities which provide free screening. Besides the clarity in policy advocacy themes, the findings provide specific information that could shape prevention programs and intervention research in the GeorgeTown community of Jackson Mississippi.|
Prostate cancer (Risk factors)
Prostate cancer (Demographic aspects)
Prostate cancer (Prevention)
Medical care (Utilization)
Medical care (Research)
Tataw, David Besong
Ekundayo, Olugbemiga T.
|Publication:||Name: American Journal of Health Studies Publisher: American Journal of Health Studies Audience: Professional Format: Magazine/Journal Subject: Health Copyright: COPYRIGHT 2012 American Journal of Health Studies ISSN: 1090-0500|
|Issue:||Date: Wntr, 2012 Source Volume: 27 Source Issue: 1|
|Topic:||Event Code: 310 Science & research|
|Geographic:||Geographic Scope: United States Geographic Code: 1USA United States|
African American men bear a disproportionate share of prostate cancer disease burden among racial and ethnic groups in the United States (CDC, 2007, American Cancer Society, 2008), yet their utilization of early diagnostic resources is lower than that of other racial and ethnic groups in the United States (American Cancer Society, 2006, 2008). Thus, there is a strong need to design educational and outreach programs that will be a good fit for the health seeking preferences of African Americans. This paper reports on the use of focus groups in community engagement to determine the health promotion and policy preferences of the residents of GeorgeTown community in Jackson Mississippi so that intervention programs could be tailored to knowledge and utilization gaps as well as to reported health promotion and policy preferences.
Despite the disproportionately heavy burden of prostate cancer among African-American men, they often fail to address their own individual health or make decisions to engage in preventive behavior or to access healthcare related to this condition (Myers et al., 1996, 1999; American Cancer Society, 2006; 2008; Lehto, Song, Stein and Coleman-Burns, 2010). Low levels of preventive behavior and utilization of existing prostate cancer prevention and early treatment services are related to the target population's empowerment and acceptability of interventions in research and practice environments (Parket et al., 2006; Sanchez et al., 2007; Dunlop et al., 2002; Du et al., 2006). Specific reasons include distrust of the health care system (Halbert et al., 1999; Ravenell, Johnson & Whitaker, 2006; Fergus, Grey & Fitch, 2002; Forrester Anderson, 2005, Cheatam, Barksdale & Rogers, 2008); lack of self-efficacy due to social and economic disenfranchisement (Drake, Shelton, Gilligan & Allen 2010; Odedina, Campbell, LaRose-Pierre, Scrivens & Hill 2008;Ross, Meade, Powe & Howard, 2009); and stigma and social isolation with reduction in self esteem due to the relation to sexual activity and performance, or being seen as "weak" (Fergus, Grey & Fitch, 2002; Forrester-Anderson, 2005; Gamble, 1997; Wolf et al. 2006; Chan et al., 2005; Powell, 1997; Taylor et al.,1999,2001), fear of prostate cancer and lack of insurance (Ford et al., 2006); fear of digital rectal examination (DRE) (Reynolds 2008, Ross et al., 2007, Woods et al., 2006); and prostate cancer screening intervention message concept, message source, and message channel (Odedina et al., 2004).
Many scholars regard empowerment as both a means and an end in enhancing and promoting health (Wallerstein 1988, 1992; Braithwaite et al., 1994; Labonte 1994; Perkins & Zimmerman, 1995, Tataw et al., 2007; Tataw, James, Bazargan, 2009). The consumer's ability to participate in health services decision making is enhanced when communication during consumer/expert encounters moves from an expert dominated monologue to a dialogue where there is an exchange of information between expert and consumer rather than a transfer of information from expert to consumer (Leea & Garvin, 2003). Dialogue nurture's the consumer's acceptability of the expert's services through active participation and trusting relationships. Trust and participation in decision making has been shown to increase consumer self efficacy and satisfaction with health services in at risk low income populations (Doescher et al., 2000; Tataw, Bazargan, Patel, 2010).
Horizontal participatory approaches have been used to both increase participation of target population in needs assessments and to increase acceptability of intervention programs in the target communities. Therefore, prostate cancer preventive behavior and service utilization among black men could be improved if the target population participated in, and informs the development of outreach and educational interventions. Community health programs with cultural and/or structural horizontal relationships in which decision making is consensual through a give and take process rather than unidirectional from experts to low income consumers have increased the consumer's voice, self efficacy, satisfaction, and greater participation in the health system (Tataw & Bazargan-Hejazi, 2010, Tataw, Bazargan-Hejazi, James, 2010).
Participatory efforts in community engagement are those "involving users and communities in all stages of the development process" Narayan (1993, iii). Oakley et al., (1991 P.8) describe participation as "voluntary or other forms of contribution by rural people to predetermined programs or projects" Many activities constitute participation by beneficiaries including completing questionnaires, taking part in a focus group, or responding to key informant interviews, but a true participatory project is one that is initiated and owned by the project beneficiaries and contributes to the empowerment of the beneficiaries (Cummings, 1997, Laverack 2004, 2007). This study adopts a participatory approach to data collection and program development by involving a Community Advisory Board from GeorgeTown in Jackson Mississippi which identifies and encourages study participants to complete surveys. The study seeks to both understand participant needs and identify their health promotion and policy preferences so as to develop health promotion and policy advocacy strategies which are acceptable to the community.
The purpose of this focus group study is to assess prostate cancer health promotion and policy preferences in the GeorgeTown community of Jackson Mississippi in order to determine appropriate prostate cancer policy advocacy themes and to design outreach and educational strategies among African Americans in the Georgetown community of the City of Jackson Mississippi. The purpose of the study is achieved through the following specific aims:
1. To assess knowledge of prostate cancer symptoms, risk factors and causes among focus group participants
2. To assess perceptions of prostate cancer screening and treatment utilization patterns among participants
3. To determine participants' prostate cancer policy and health promotion preferences
4. To discuss the implications of findings in 1 to 3 above on the development of prostate cancer policy advocacy, and health promotion programs for the GeorgeTown community of Jackson Mississippi.
The above specific aims are achieved through a single focus group activity involving 20 residents drawn from the GeorgeTown community of Jackson Mississippi held on February 6, 2008.
This study is significant because findings related to needs, service utilization and health promotion preferences could contribute to policy advocacy and intervention strategies developed with the input of the target population. These strategies will be more acceptable to the community since the community will take ownership of what they developed themselves. In addition, prostate cancer imposes a significant and disproportionate disease burden on African American men in Mississippi and the United States and this study advances prevention work in prostate cancer among this at risk population.
CONTRIBUTIONS TO THE LITERATURE
This study contributes to the literature on prostate cancer and health promotion by showing how qualitative research can be used to facilitate the input of target populations in health policy advocacy and health promotion program development. The commonly accepted norm in scientific circles has been for the researcher to engage the community and lead the process forward. However, this does not necessarily imply or involve a community that is engaged in the process, directing and setting the pace for thinking, planning and implementation. The study goes beyond the traditional needs determination common in planning studies and includes identification of the target community's preferred educational and policy intervention strategies in a participatory planning process. In addition, the health promotion strategies identified will increase or reaffirm the tools available for researchers and practitioners involved in prostate cancer reduction work in low income communities.
STUDY SETTING AND POPULATION CHARACTERISTICS
DISPARITIES IN PROSTATE CANCER BURDENS IN MISSISSIPPI AND THE UNITED STATES
Cancer is the second leading cause of death in both the United States (US) and Mississippi (Kung et al., 2008; Mississippi Department of Health Vital Statistics, 2006). The American Cancer Society (ACS) estimates that 13,400 new cases of cancer were diagnosed in Mississippi by the end of 2005, including 2,010 new cases of prostate cancer (American Cancer Society, 2008). By the end of 2004, data from the Centers for Disease Control and Prevention (CDC) revealed that Mississippi ranked second in U.S. in cancer death rates (CDC, 2007). In 2003, the incidence rate for cancer in Mississippi was lower than the average incidence rate for the nation; however, the death rate from cancer in Mississippi as enumerated above was higher than that of the US (Mississippi State Department of Health, Department of Health Cancer Registry, 2005).
In 2005, prostate cancer was the most common type of cancer found among Mississippi men with incidents at 161 per 100,000, closely followed by lung and bronchial cancer with incidents at 111.9 per 100, 000 (Mississippi, Department of Health Cancer Registry, 2005). Although ACS reported that the incidence of prostate cancer is on the decline in Mississippi, prostate cancer still ranks second as the leading cause of death among men. African American men have the highest incidence, prevalence, and mortality due to prostate cancer relative to other racial and ethnic groups in Mississippi.
According to the CDC, between 1970 and 1994, the death rate due to prostate cancer among black males in the state was twice the rate for white males. Mortality rates for white males are 21.2 per 100, 000 versus. 41.91 per 100, 000 for African American males (CDC, 2007). According to National Institutes of Health estimates, in 2008 dollars, the median cost for prostate cancer was $34,500 (Greenberg, Earle, Fang, Eldar-Lissai and Neumann 2010). Also, the overall cost of cancer care in the US in 2007 was estimated to be $219 billion with direct care costs being $89.0 billion of which $18.2 billion were attributed to productivity loss and the balance due to indirect mortality costs (Meropole et al., 2009).
In 2005, United States cancer statistics revealed that the incidence of prostate cancer in Mississippi among African American men almost doubled that of white men i.e. 221.2 per 100, 000 versus 139.2 per 100, 000 (American Cancer Society, 2008). This number clearly shows a disparity in the incidence of prostate cancer in the state with African American men bearing the heaviest burden. African American numbers also drive the higher state distribution when compared to national levels. Table 2 below adapted from the Mississippi Statistically Automated Health Systems(MSTAHRS) shows that from 2005 to 2009 the prostate cancer age adjusted death rate among African American men was about three times the death rate for white men (61.9 per 100,000 for African Americans vs. 20.3 per 100,000 for whites).
The Mississippi State Department of Health Vital Statistics, 2005, reported that, other than respiratory (trachea, bronchus, and lung cancer), prostate cancer is the second leading cause of cancer deaths among Mississippi men, and a heavy burden of the disease is still borne by black men in the state (Mississippi Department of Health, Vital Statistics, 2006). Unless innovative programs are put in place to combat this trend, it will continue to be a major health issue in the state, costing lives and resources. Increased awareness of risk factors for this disparity, effective planning and implementation of prevention programs and policy development/adjustment are major requirements to address the disparate incidence and prevalence of disease among minority populations (Guerra et al., 2007; Ford et al., 2006; Taylor et al., 2001; Bennet et al., 1998; Parker et al., 2006; Sanchez et al., 2007).
The targeted community of GeorgeTown is at the center of a mostly minority population which usually comes with high levels of poverty and other demographic, socio-economic risks for negative health outcomes, including prostate cancer (Sanchez et al., 2007; Dunlop et al., 2002; Du et al., 2006; Myers et al., 1999)..
Table 1 below presents the demographic statistics for Mississippi, Hinds County, and City of Jackson. The GeorgeTown community is part of Hinds County district 2 with a population of 28,939 (U.S. Census Bureau, 2010, retrieved July 14, 2011). The African American population of GeorgeTown is 86.4%, with Black males being 11,574 (45.13%). Black males 45 years and over numbered 3,372 or 29.14%. The City of Jackson (of which GeorgeTown forms about 40% of City Council Ward 3), has a population of 175,283 (U.S. Census Bureau, 2010, retrieved July 14, 2011). African Americans make up 76.77% or 134,567 of City Council Ward 3.
While the specific population characteristics of GeorgeTown are not available, the community nevertheless reflects the trends in the City of Jackson itself. For Jackson, the median household income (2007-2009) was $32,306 (African Americans: $28, 007; White: $51,337) compared to that of Mississippi ($37,034) and Hinds County ($38,250). With regard to educational attainment for people 25 years and older, 76.18% of African Americans had high school and higher education, compared to 92.02% of whites in Jackson. This is higher than the state rates at 69.12% for African Americans and 83.03% for whites.
Table 3 above provides age-adjusted prostate cancer mortality rates for Hinds County which is the metropolitan area of the City of Jackson from 2007 to 2009 and Table 4 presents screening rates for the State of Mississippi from 2004 to 2010. Prostate cancer mortality rates for African Americans drive the high rates in the state compared to national figures. Prostate cancer mortality is much higher among African Americans than Whites across all age groups affected. However, even with these glaring rate differences, African American men tend to engage in prostate cancer screening at much lower levels than white men, with rate differences widening from 2006 through 2010.
This is a qualitative study involving a single focus group of 20 participants drawn from the GeorgeTown community in the City of Jackson Mississippi. The study uses a community engaged-participatory-action approach involving a Technical Assistance Board and Community Advisory Board. Discussions covered six questions developed by the Technical Assistance Board (TAB) and validated by the Community Advisory Board (CAB). The Technical Board and Community Advisory Board were also responsible for recruitment and facilitating the focus group. The CAB consisted of representation from community stakeholders including: prostate cancer sufferers/survivors; prostate cancer support groups; faith based organizations; community based and ethnic organizations (FBOs, CBOs, EOGs); researchers and educators; care givers/providers; policy representatives from state and local governments; target community members; representatives from the private sector including the local chambers of commerce, business owners, other community coalitions and networks. The Technical Advisory Board consisted of prostate cancer research and education experts and the community.
This study was approved by the Jackson State University Mississippi and the Indiana University Kokomo Institutional Review Boards. Data were collected during one focus group session which took place from 6.00PM to 8.00PM on February 6, 2008 involving 20 members drawn from the GeorgeTown community of Jackson Mississippi. The Technical Assistance Board developed the questions and The Community Advisory Board administered both the questions and the consent forms.CAB members also facilitated the focus group discussions. The questions developed by the Technical Assistance Board were reviewed and validated by the Community Advisory Board. The Informed consent form administered by CAB members was read and explained to all attendees, then signed by all participants. Participants' focus group questions were asked by a CAB member while responses and discussions were recorded by a Technical Assistance Board members and project interns via:
* Flip charts
* Audio recorder (Olympus N 4123--Olympus Imaging Corp)
* Focus group participants' notes
* Project Director's notes
SAMPLING AND RECRUITMENT
Participants were chosen using a modified snowball sampling methodology which was supported by the Community Advisory Board (CAB). The Community Advisory Board was selected using a snowball sampling method. Focus group participants were then recruited by CAB members who invited additional participants during community association meetings, community events, at barbershops, at service stations, via telephone calls, and house-to-house visits.
Before the focus group meetings, community representatives were trained in needed outreach skills for the Community Advisory Board. Meetings of the TAB and CAB were held and training was provided to members on their role in both research and advocacy. Focus group agenda and fliers were distributed to CAB members who distributed the fliers and meeting information through announcements at Churches, Community centers, Community events, Barber shops, Television, Radio and Telephone calls. No specific incentives were provided for participation, however, dinner was provided due to the time of activity (6.00 pm-8.00 pm)
INCLUSION AND EXCLUSION
To be part of the focus group, participants must be male African Americans; female African American related to a male survivor or sufferer of prostate cancer, 18 years or older; live in the community of GeorgeTown in Jackson Mississippi; and be willing to complete a written consent form. Participants must not have reported or exhibited symptoms of substance use or mental health.
Focus Group discussion themes designed by the Technical Assistance Board and validated by the Community Advisory Board covered the following topics: knowledge of prostate cancer; knowledge of existing prostate cancer prevention facilities; perceptions of utilization of existing prostate cancer facilities; current prostate cancer educational strategies; and prostate cancer related policy recommendations to the Local Department of Health.
The complete discussion topics with the sub themes are listed below.
1. What do we know about Prostate Cancer?
c. What puts us at risk for developing prostate cancer?
d. How do we prevent it?
2. What do we know about facilities for Prostate Cancer Prevention in our area?
a. Where are they?
b. When are they open?
c. What services do they provide?
d. Do we know if they provide screening services?
e. Who are the people in the facilities?
3. Are the facilities being used by members of the community?
a. If yes, what about the facilities make us want to use them?
b. If the facilities are not being used, why?
c. What would we like to see or experience in the facilities that will make us want to use them?
4. How do we get prostate cancer prevention information to the community?
a. What kind of information?
b. How do we present the information?
c. Who should present the information?
d. Where and who does the information go to?
5. What policies are needed to prevent prostate cancer in this community?
a. Issues to be addressed
b. How to establish the policies in the Health Department
c. Who should implement the policies?
d. What role(s) should health care providers play?
e. How will we present and follow up on the policies to ensure appropriate implementation?
In this study, focus group data are transcribed into Microsoft word documents and subjected to thematic analysis. Responses are analyzed qualitatively by theme, domain, sub domain, source statement, research question and hypotheses. The thematic approach identifies common themes expressed by participants. Words used are also analyzed to ensure consistency in meaning. Emerging patterns in the themes are then used to understand the community's knowledge; utilization; and health promotion and policy preferences.
Table 5 below presents the number of statements made by focus group participants for each focus group question. Table 6 presents a data analysis grid including the question, the domain of the question, the theme, the sub theme, original statements and potential research implication of participant responses.
Overall, 20 participants attended the focus group meeting (male=70% and female=30%) age between 25 and 75 years. In all, 110 statements were collected and transcribed. These statements were divided into the question numbers that were asked as shown in Table 5 below.
The grid of statements and their relevant themes are presented in Table 6 below. The responses showed gaps in knowledge of symptoms, risk factors, causes of prostate cancer, prevention behavior; and existing prevention facilities. The responses also offered reasons for utilization of prevention facilities and identified barriers to utilization. Information dissemination and prostate cancer prevention policy options were also discussed. Technology infrastructure was also noted as a barrier to information dissemination.
A summary of statements made by themes are listed below:
* Symptoms, risk factors, and causes of prostate cancer identified include: urinary frequency, comfort, color, blood and urgency, being black, testosterone, improper diet, nutrition, lifestyle, beverages, being in a night club all night, not seeking medical examination, inheritance and heredity.
* Prevention behavior needed for prostate cancer identified include the following: risk awareness, early screenings, annual screenings, dietary patterns, and screenings for African Americans over age 40. Some of the participants were unaware of the preventive aspects.
* Prostate Cancer prevention/care service facilities and providers are known and identified by some of the participants while some do not know any. Those who know identified two facilities and five practitioners (urology, family medicine and primary care who also provide referral to urology). Prostate Specific Antigen and Digital Rectal Exam (DRE) are identified as screening services provided.
* Facilities are used by a select number of survivors who join a prevention group. Participants who use facilities identify positive provider staff attitude towards the men and effective information dissemination through constant reminders as reasons for using facilities. In addition, barriers to care facility usage include unfriendly provider staff attitudes towards the men, fear of discovery, unclear messages (incomprehension), inertia, apathy, unemployment, and lack of insurance coverage for care.
* Suggested solutions to overcome barriers included culturally competent communications; having a community spokesperson; increase health literary, working through community identified centers of influence (clergy, etc), centers of living and social activities (barber shops, salons, churches, work places) and transit (billboards, etc) were also identified. It was also suggested that health professionals should be involved in health fairs and that the use of technology including DVDs should be limited as many people might not have the hardware to use DVDs.
* Prostate cancer policy options identified include the following: mandatory screening and referral regardless of financial qualification; free screening in emergency rooms; tax breaks for facilities that provide free screening; and mandatory referrals.
This study's findings of gaps in knowledge and service utilization in the African American community are consistent with findings in other prostate cancer studies. However, the study has some refreshing revelations related to utilization, cultural competencies of researchers, health education outlets and policy preferences. The study provides a clear profile of the community member who overcomes barriers to the utilization of existing prostate cancer facilities and advances refreshing concrete proposals for health promotion and public policy. A revelation which merits separate mention is the class, linguistic, and cultural competency of the focus group questions. The fact that the Community Advisory Board had to reframe the focus group questions in a number of instances shows a deficit in the ability of experts to speak at a level that is comfortable to this low income African American community. In addition, the technology divide between this low income community and the rest of America represents a continuous source of disparity in health information access for African Americans.
Findings of lack of knowledge of symptoms, risk factors, and the causes of prostate cancer; as well as low levels of resource utilization among participants are consistent with other findings in the literature. Other prostate cancer studies have found low levels of knowledge and preventive activity for this condition among African Americans (Myers et al., 2002; American Cancer Society, 2006; Wallner et al., 2008).
Barriers to utilization identified by participants are tied to lack of self efficacy, lack of self esteem, lack of trust of the health system, disrespectful treatment in the healthcare system, fear of knowing prostate cancer status, lack of knowledge; lack of ability to pay, and technology barriers including the lack capacity to use DVDs as a source of health information. Except for technology barriers, prior studies on prostate cancer among African Americans have offered similar explanations for low levels of utilization including the following specific reasons: distrust of the health care systems (Ravenell, Johnson & Whitaker, 2006; Fergus, Grey & Fitch, 2002); lack of self-efficacy due to social and economic disenfranchisement; and stigma and social isolation with reduction in self esteem due to the relation to sexual activity and performance, or being seen as "weak" (Fergus, Grey & Fitch, 2002; Gamble, 1997; Wolf et al. 2006; Chan, Gann, Giovannuccci et al., 2005; Powell, 1997; Taylor et al. , 1999). Unlike similar studies, these findings provide a rare glimpse into the three dimensional profile of people who use existing resources. These are people who are survivors, have joined a prevention group, and are lucky to have a supportive provider environment. This profile suggests that knowledge or experience with prostate cancer is an important factor in increasing utilization. It also underscores the need for education, acceptable provider environment, and social support.
Concrete proposals for overcoming existing barriers include culturally competent prevention messages; using familiar community spokes persons such as rap artists; working through community identified centers of influence (e.g.clergy); centers of living and social activities (barber shops, salons, churches, work places); and transit (e.g. billboards). There was a rare statement of caution regarding the use of the church as an information center for this particular condition since the church might be uncomfortable with messaging even remotely related to sex. It is also remarkable that these proposals do not include contemporary technology such as hand-held devices or second generation web technologies including social networking sites, wikis and blogs which are already part of the health information system in mainstream communities (Wagner et al. 2009).
Prostate cancer policy options identified included the following: mandatory screening and referral regardless of financial qualification; free screening in emergency rooms; tax breaks for facilities that provide free screening; and mandatory referrals. The suggestion of tax breaks for providers is an unusual policy proposal from a low income African American community and shows how tax code remedies are entering health promotion conversations.
LIMITATIONS OF STUDY
Despite the similarities between many findings in this study and other studies on prostate cancer; and the clarity of health promotion and health policy preferences that emerged from the study, it still has its limitations. As with most focus groups, key drawbacks in this study are the lack of anonymity and limitations to generalizability. It was not completely clear if participants gave their frank perspectives since they were speaking openly among other community members. Also, readers should be cautious about generalizing the findings from this single focus group to the entire population of Georgetown in Jackson Mississippi without corroboration with other findings from comparable focus groups or assessments using other methods of inquiry. These findings by themselves might not represent or explain all prostate cancer prevention patterns in the entire population of GeorgeTown in Jackson Mississippi.
CONCLUSION AND IMPLICATIONS FOR PROGRAM DEVELOPMENT AND INTERVENTION RESEARCH
This paper has described the use of focus groups in a community engagement with the African American urban community of GeorgeTown Mississippi to identify and understand prostate cancer knowledge; patterns of resource utilization; and health promotion and policy options. Besides the clarity in policy advocacy themes, the findings provide specific information which could be used to shape prevention programs and intervention research in the GeorgeTown community of Jackson Mississippi.
Based on the findings in this study, programs or intervention research to improve prostate cancer prevention behavior in GeorgeTown and similar communities should be rooted in empowerment approaches with specific tools to activate self efficacy, self esteem, trust, knowledge, ability to pay, and acceptability of the provider environment. Trust and participation in decision making has been shown to increase consumer self efficacy and satisfaction with health services in at risk low income populations (Doescher et al., 2000; Tataw, Bazargan, Patel, 2010). Prostate cancer preventive behavior and service utilization among black men could be improved if the target population participates in, and informs the development of educational and policy interventions. Community health programs with cultural and/or structural horizontal relationships in which decision making is consensual have created the appropriate ecological context which has increased at risk consumers' voice, self efficacy, satisfaction, and greater participation in the health system (Consedine et al., 2011; Tataw & Bazargan-Hejazi, 2010, Tataw, Bazargan-Hejazi, James, 2010). A paradigm shift that includes contextual balance between the community and expert perspective can help to enhance self-efficacy, satisfaction, greater participation, and acceptability of intervention initiatives.
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David B. Tataw, MMIS, MPA, PhD, is affiliated with Indiana University Kokomo, Charles R. Drew University Los Angeles, and The Institute for Health Policy and Systems Effectiveness. Address Correspondence to: 2411 Schick Dr, KOKOMO, IN 46902 firstname.lastname@example.org. Olugbemiga T. Ekundayo, MD, MPH, DrPH is affiliated with the Department of Epidemiology and Biostatistics, School of Health Sciences, College of Public Service, Jackson State University, Mississippi.
Table 1: Demographic characteristics for Mississippi, Hinds County and city of Jackson. Mississippi Hinds County Jackson Total Population 2,937,976 248,018 175,283 Black 1,093,403 163,401 134,567 Total Male 1,423,071 116,966 81,513 Black Male 513,830 76,387 63,635 Black Male 45+ 138,747 19,174 15,886 Median Household $37,034 $38,250 32,306 Income (Total) Median Household $24,289 $29,620 $28,007 Income (Black) Median Household $46,630 $54,140 $51,337 Income (White) Per Capita Income $19,743 $20,822 $19,605 (Total) Per Capita Income 12,488 $15,015 $15,151 (Black) Per Capita Income $24,536 $33,274 $39,119 (White) Education * (Black) 69.12% 77.08% 76.18% Education (White) 83.03% 91.94% 92.02% * Population 25 years age and over; Source: U.S. Census Bureau 2007-2009 three year data set. Table 2: Prostate Cancer *** Age Adjusted Deaths and Rates *, in Metro Jackson Race (2005-2009) Race (3 Group) White Black Other ** Total Year Number Rate Number Rate Number Rate Number Rate 2005 169 22.8 164 66.4 0 0.0 333 33.3 2006 174 21.1 179 66.6 0 0.0 353 31.9 2007 166 20.1 165 62.5 1 7.1 332 29.8 2008 165 19.4 158 56.3 1 7.7 324 28.0 2009 158 18.5 150 59.0 2 14.1 310 27.4 Total 832 20.3 816 61.9 4 6.5 1,652 29.9 * Age-adjusted rates expressed as per 100,000 population, based on standard population of census year 2000 ** Rates in cells for "Other" are based on less than 20 events and are unstable *** Prostate cancer rates based on male specific population Adapted from: Mississippi Statistically automated Health Resource system (MSTAHRS) Table 3: Prostate Cancer *** Age Adjusted Deaths and Rates* in Metro Jackson Race (2005-2009) Race (3 Group) White Black Other ** Total Year Number Rate Number Rate Number Rate Number Rate 2005 10 22.0 19 69.8 0 0.0 29 39.1 2006 5 10.6 18 58.0 0 0.0 23 28.7 2007 5 10.4 18 58.4 0 0.0 23 28.3 2008 10 20.3 14 47.3 0 0.0 24 29.9 2009 6 11.4 15 52.0 0 0.0 21 24.7 Total 36 14.7 84 56.5 0 0.0 120 29.8 * Age-adjusted rates expressed as per 100,000 population, based on standard population of census year 2000 ** Rates in cells for "Other" are based on less than 20 events and are unstable *** Prostate cancer rates based on male specific population Adapted from: Mississippi Statistically automated Health Resource system (MSTAHRS) Table 4: Prostate Cancer Screening (PSA) Men aged 40+ who have had a PSA test within the past two years. Mississippi 2004-2010 Race Year White Black % CI n % CI 2004 54.2 (50.4-58.0) 453 51.3 (44.4-58.2) 2006 55.7 (52.3-59.1) 623 53.6 (47.1-60.1) 2008 57.2 (54.1-60.4) 938 49.8 (44.3-55.4) 2010 57.3 (54.0-60.7) 937 46.9 (41.1-52.7) Race Year All n % CI n 2004 152 53.0 (49.7-56.3) 636 2006 172 54.7 (51.7-57.7) 826 2008 272 54.5 (51.8-57.2) 1261 2010 290 53.6 (50.7-56.5) 1274 % = Weighted Percentage, CI = Confidence Interval, n = Cell Size (Numerator) Source: Adapted from the US CDC Office of Surveillance, Epidemiology and Laboratory Services, BRFSS Prevalence and Trends Data Table 5. Number of Statements Made by Focus Group Question Respondents Question Question n-Stmts * Totals # 1 What do we know about Prostate Cancer? a. Symptoms 9 34 b. Causes 7 c. What puts us at risk for developing 6 prostate cancer? d. How do we prevent it? 12 2 What do we know about facilities for Prostate Cancer Prevention in our area? a. Where are they? 1 10 b. When are they open? 1 c. What services do they provide? 2 d. Do we know if they provide screening 6 services? e. Who are the people in the - facilities? 3 Are the facilities being used by members of the community? a. If yes, what about the facilities 4 18 make us want to use them? b. If the facilities are not being 10 used, why? c. What would we like to see or 4 experience in the facilities that will make us want to use them? 4. How do we get prostate cancer prevention information to the community a. What kind of information? 4 16 b. How do we present the information? 4 c. Who should present the information? 8 d. Where and who does the information - go to? 5 What policies are needed to prevent prostate cancer in this community? a. Issues to be addressed 9 32 b. How to establish the policies in the 11 Health Departments c. Who should implement the policies? 4 d. What role(s) should health care 5 providers play? e. How will we present and follow up on 3 the policies to ensure appropriate implementation? Total number of statements 110 TABLE 6: Focus Group Questions and Data analysis Grid Question # 1.Domain Statement 2.Theme 3.Sub theme 1a 1.Symptoms * Cannot understand the term 2.Knowledge symptoms, when explained-- 3.Knowledge * frequent urination, of the * frequent incomplete disease urination, * discomfort, * pain on urination * change in the color of urine, * enlarged prostate, * blood in urine, * urgency to urinate Total Statements 9 for Question 1a 1b 1.Causes * Being a black man, 2.Knowledge * Testosterone, 3.Knowledge * Improper diet, of the cause * Nutrition, of disease * Lifestyle, * Beverages, * Being in a night club all night Total Statements 7 for Question 1b 1c 1.Risks * Age, 2. Knowledge * Being black, 3. Knowledge * High testosterone, of risks for * Not seeking medical exam, the disease * Inheritance, * Hereditary Total Statements 6 for Question 1c 1d 1.Prevention * Early testing, 2. Prevention * Early examination, Behavior * Yearly examination, 3.Knowledge * Watch your diet intake, of Prevention * Proper nutrition, * Attending free screenings at churches, * Young men, * Screening at 40 year s and above age for African Americans, * 45 years American cancer society, * Acknowledge the risk, * Good health practices. * Don't know how to prevent it (3) Total Statements 12 for Question 1d Total Statements 34 for Question 1 2a 1.Knowledge * Don't know, only know 2.Knowledge about UMMC, St. Dominic's 3.Knowledge of location 2b 1.Knowledge * Know UMC/JMM working hours 2.Knowledge 3.Knowledge of timings of location 2c 1.Knowledge * Annual digital rectal 2.Knowledge examinations, 3.Knowledge * prostate specific antigen of the are some of the tests that services were done before provided the referral Total Statements for 4 Questions 2 a, b and c 2d 1.Knowledge * Sometimes about free 2.Knowledge screenings, 3.Knowledge * Announcements in paper, about the * Prostate support groups. screening * Dr. Frazier, Dr. Ron services Davies, Dr. Ross, Dr. Morrison, are some of the health care providers in the community. * Most of the hospitals have urologists. * Family medicine physicians like Dr. Robert Smith may refer to urologist. Total Statements 10 for Question 2 3a 1.Prevention * Technology, 2.Services * Reminders from the health care providers, 3.Experiences * Friendly nature of the staff in the surroundings, * Referral from the family physician. 3b 1.Prevention * Men don't pay attention. 2.Services * How do you can get people 3.Barriers who don't lane * They make excuses, * Fear might stop them. * Lack of knowledge, * Lack of proper explanation, * Not bringing the issue of interest to the level of patient, and men do not want to deal with prostate cancer. * Other than that: --unemployment and lack of insurance might be the reasons Participants were asked to * The fear of having explain the term fear in prostate cancer, detail. * Fear of going to doctor and finding it out. * Technology, 3c 1.Prevention * reminders from the health 2.Services care providers, 3.Expectations * Friendly nature of the staff in the surroundings, * Referral from the family physician Total Statements for 18 Question #3 4a 1.Health * inviting people, education and * people might not respond Promotion or interact until something 2.Information strikes home, 3.kind * family members involved, or * someone close to us are going through it Total Statements for 4 Question 4a 4b 1.Health * Have spokes persons to education and come and present it. Promotion * Center of influences like 2.Education church, pastor, 3.Presentation * try to get people's attention on to the issue. * Announcements through the mass media Total Statements for 4 Question 4b 4c 1.Health * The places where the promotion information has to go to are 2.Education * Churches 3.Target * Work places population * Bulletin boards * Commercials * Rap videos about the prostate cancer * Community organizations bring them * Can have a working frame of peer groups Total Statements for 8 Question 4c Total Statements for 16 Question #4 5a 1.Policy * Communication with the advocacy community members through 2.Policy churches, fraternities, 3.Issues of sororities, barbers shop. participation * Insurance, in screening * Free screening, * Drafts have to be worked out. * Issues regarding follow up care even without adequate resources, * Vocational rehab, * Lack of knowledge of status, * All community clinics should screen, * Follow up regardless of screen. Total Statements for 9 Question 5a 5b 1.Policy This question was not clear advocacy 2. Policy to participants, 3. Establishment Question was reframed to how in the health the agencies make survivors departments know the services they provide. * Service education, * Health literacy, * Sign in the hospitals, and inform people they will get care without money. * Cannot refuse care in the emergency rooms for people who do not have insurance, * Cannot go to emergency room for prostate cancer screening. * Hospitals have to obligate into the communities, * tax exemptions for those health care providing facilities which offer free screenings, * Is health care a right or privilege, * Issues regarding corporate citizens. Total Statements for 9 Question 5b 5c 1.Policy * Meetings for the people advocacy not coming, 2.Policy * So got the people with 3.Provision of information like DVD's, health care * Might implement with with education, implementation * Bringing pressure to of the policy implement the policies Total Statements for 4 Question 5c 5d 1.Policy * Culturally sensitive advocacy methods to display 2.Policy information 3.Policy * Lots of people might implementation not have the DVD's. * Faith based organizations, * talks at the health fair by health care professionals, might help. * personal priorities are the first thing, may be not media; Total Statements for 5 Question 5d 5e 1.Policy * Churches are the best advocacy place to catch most of them. 2.Policy * Education means not just 3.Policy books, but spreading implementation information through prostate cancer survivors and in form of personal sufferers testimonials. * Sometimes churches might have issues to have discussions about the prostate cancer then we have to discuses about it outside. Total Statements for 3 Question 5 Total Statements for 30 Question #5 Question # 1.Domain Research 2.Theme 3.Sub theme 1a 1.Symptoms Knowledge of prostate cancer, 2.Knowledge symptoms 3.Knowledge of the When asking questions, disease researchers need to use terms appropriate to the community in framing questions--Cultural/ linguistic competence Total Statements for Question 1a 1b 1.Causes 2.Knowledge 3.Knowledge Race, hormones, diet and of the cause lifestyle play a etiological of disease role in prostate cancer Total Statements for Question 1b 1c 1.Risks Age, race, hormones, lack of 2. Knowledge screenings, genetic factors are 3. Knowledge some of the risk for prostate of risks for cancer. the disease Total Statements for Question 1c 1d 1.Prevention Screening Details: 2. Prevention Early screenings, annual Behavior screenings, dietary patterns, 3.Knowledge screenings for African of Prevention Americans over age 40 are some of preventive practices for prostate cancer, while some of the participants are unaware of the preventive aspects Total Statements for Question 1d Total Statements for Question 1 2a 1.Knowledge The participants are unaware 2.Knowledge of the location of facilities 3.Knowledge that specifically address the of location issue of prostate cancer. 2b 1.Knowledge Facilities Availability 2.Knowledge 3.Knowledge of timings of location 2c 1.Knowledge Prostate cancer screening 2.Knowledge Knowledge 3.Knowledge of the services provided Total Statements for Questions 2 a, b and c 2d 1.Knowledge Participants have knowledge 2.Knowledge about existing health care 3.Knowledge providers in the community, about the the screening services screening available. However the services awareness of free screening programs to all the people in the community was doubtful. Total Statements for Question 2 3a 1.Prevention Health care facilities as well 2.Services as providers have to meet the needs and the level 3.Experiences of understanding of the community. 3b 1.Prevention Men's attitude, beliefs, fears 2.Services due to lack of knowledge, 3.Barriers education Support and insurance might hinder the preventive aspects of prostate cancer. Participants were asked to Fear of personal discovery explain the term fear in detail. 3c 1.Prevention Information, Technology, 2.Services Customer Service and 3.Expectations Referrals Total Statements for Question #3 4a 1.Health Engaging prostate education and cancer survivors and Promotion community members 2.Information might draw the 3.kind attention of other members Total Statements for Question 4a 4b 1.Health Church, celebrities education and influence the attention Promotion span of the community 2.Education personnel 3.Presentation Total Statements for Question 4b 4c 1.Health Development of promotion community structures 2.Education involving them through 3.Target active participation, population these structures help in bridging the gap between community needs and researcher's objectives Total Statements for Question 4c Total Statements for Question #4 5a 1.Policy Developing community based advocacy and engaged networks to 2.Policy address identified issues 3.Issues of through legislative and participation in screening Total Statements for Question 5a 5b 1.Policy Dissemination of information advocacy 2. Policy about health services related 3. Establishment to prostate cancer care in the health departments Monitoring community and survivor response to information dissemination Monitoring impact of information on community health outcomes through information surveillance systems Total Statements for Question 5b 5c 1.Policy advocacy Engaging the community 2.Policy in health promotion and 3.Provision of disease prevention health care 3Monitoring outcome with and impact implementation of the policy Total Statements for Question 5c 5d 1.Policy advocacy Cultural Competence 2.Policy 3.Policy Dissemination format and implementation context Community problem prioritization Total Statements for Question 5d 5e 1.Policy advocacy 2.Policy 3.Policy implementation Reaching community Prostate Cancer survivors (PCSs) Total Statements for 3 Question 5e Total Statements for 30 Question #5
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