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1.  Reinterpreting Ethnic Patterns among White and African American Men Who Inject Heroin: A Social Science of Medicine Approach 
PLoS Medicine  2006;3(10):e452.
Background
Street-based heroin injectors represent an especially vulnerable population group subject to negative health outcomes and social stigma. Effective clinical treatment and public health intervention for this population requires an understanding of their cultural environment and experiences. Social science theory and methods offer tools to understand the reasons for economic and ethnic disparities that cause individual suffering and stress at the institutional level.
Methods and Findings
We used a cross-methodological approach that incorporated quantitative, clinical, and ethnographic data collected by two contemporaneous long-term San Francisco studies, one epidemiological and one ethnographic, to explore the impact of ethnicity on street-based heroin-injecting men 45 years of age or older who were self-identified as either African American or white. We triangulated our ethnographic findings by statistically examining 14 relevant epidemiological variables stratified by median age and ethnicity. We observed significant differences in social practices between self-identified African Americans and whites in our ethnographic social network sample with respect to patterns of (1) drug consumption; (2) income generation; (3) social and institutional relationships; and (4) personal health and hygiene. African Americans and whites tended to experience different structural relationships to their shared condition of addiction and poverty. Specifically, this generation of San Francisco injectors grew up as the children of poor rural to urban immigrants in an era (the late 1960s through 1970s) when industrial jobs disappeared and heroin became fashionable. This was also when violent segregated inner city youth gangs proliferated and the federal government initiated its “War on Drugs.” African Americans had earlier and more negative contact with law enforcement but maintained long-term ties with their extended families. Most of the whites were expelled from their families when they began engaging in drug-related crime. These historical-structural conditions generated distinct presentations of self. Whites styled themselves as outcasts, defeated by addiction. They professed to be injecting heroin to stave off “dopesickness” rather than to seek pleasure. African Americans, in contrast, cast their physical addiction as an oppositional pursuit of autonomy and pleasure. They considered themselves to be professional outlaws and rejected any appearance of abjection. Many, but not all, of these ethnographic findings were corroborated by our epidemiological data, highlighting the variability of behaviors within ethnic categories.
Conclusions
Bringing quantitative and qualitative methodologies and perspectives into a collaborative dialog among cross-disciplinary researchers highlights the fact that clinical practice must go beyond simple racial or cultural categories. A clinical social science approach provides insights into how sociocultural processes are mediated by historically rooted and institutionally enforced power relations. Recognizing the logical underpinnings of ethnically specific behavioral patterns of street-based injectors is the foundation for cultural competence and for successful clinical relationships. It reduces the risk of suboptimal medical care for an exceptionally vulnerable and challenging patient population. Social science approaches can also help explain larger-scale patterns of health disparities; inform new approaches to structural and institutional-level public health initiatives; and enable clinicians to take more leadership in changing public policies that have negative health consequences.
Bourgois and colleagues found that the African American and white men in their study had a different pattern of drug use and risk behaviors, adopted different strategies for survival, and had different personal histories.
Editors' Summary
Background.
There are stark differences in the health of different ethnic groups in America. For example, the life expectancy for white men is 75.4 years, but it is only 69.2 years for African-American men. The reasons behind these disparities are unclear, though there are several possible explanations. Perhaps, for example, different ethnic groups are treated differently by health professionals (with some groups receiving poorer quality health care). Or maybe the health disparities are due to differences across ethnic groups in income level (we know that richer people are healthier). These disparities are likely to persist unless we gain a better understanding of how they arise.
Why Was This Study Done?
The researchers wanted to study the health of a very vulnerable community of people: heroin users living on the streets in the San Francisco Bay Area. The health status of this community is extremely poor, and its members are highly stigmatized—including by health professionals themselves. The researchers wanted to know whether African American men and white men who live on the streets have a different pattern of drug use, whether they adopt varying strategies for survival, and whether they have different personal histories. Knowledge of such differences would help the health community to provide more tailored and culturally appropriate interventions. Physicians, nurses, and social workers often treat street-based drug users, especially in emergency rooms and free clinics. These health professionals regularly report that their interactions with street-based drug users are frustrating and confrontational. The researchers hoped that their study would help these professionals to have a better understanding of the cultural backgrounds and motivations of their drug-using patients.
What Did the Researchers Do and Find?
Over the course of six years, the researchers directly observed about 70 men living on the streets who injected heroin as they went about their usual lives (this type of research is called “participant observation”). The researchers specifically looked to see whether there were differences between the white and African American men. All the men gave their consent to be studied in this way and to be photographed. The researchers also studied a database of interviews with almost 7,000 injection drug users conducted over five years, drawing out the data on differences between white and African men. The researchers found that the white men were more likely to supplement their heroin use with inexpensive fortified wine, while African American men were more likely to supplement heroin with crack. Most of the white men were expelled from their families when they began engaging in drug-related crime, and these men tended to consider themselves as destitute outcasts. African American men had earlier and more negative contact with law enforcement but maintained long-term ties with their extended families, and these men tended to consider themselves as professional outlaws. The white men persevered less in attempting to find a vein in which to inject heroin, and so were more likely to inject the drug directly under the skin—this meant that they were more likely to suffer from skin abscesses. The white men generated most of their income from panhandling (begging for money), while the African American men generated most of their income through petty crime and/or through offering services such as washing car windows at gas stations.
What Do These Findings Mean?
Among street-based heroin users, there are important differences between white men and African American men in the type of drugs used, the method of drug use, their social backgrounds, the way in which they identify themselves, and the health risks that they take. By understanding these differences, health professionals should be better placed to provide tailored and appropriate care when these men present to clinics and emergency rooms. As the researchers say, “understanding of different ethnic populations of drug injectors may reduce difficult clinical interactions and resultant physician frustration while improving patient access and adherence to care.” One limitation of this study is that the researchers studied one specific community in one particular area of the US—so we should not assume that their findings would apply to street-based heroin users elsewhere.
Additional Information.
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.0030452.
The US Centers for Disease Control (CDC) has a web page on HIV prevention among injection drug users
The World Health Organization has collected documents on reducing the risk of HIV in injection drug users and on harm reduction approaches
The International Harm Reduction Association has information relevant to a global audience on reducing drug-related harm among individuals and communities
US-focused information on harm reduction is available via the websites of the Harm Reduction Coalition and the Chicago Recovery Alliance
Canada-focused information can be found at the Street Works Web site
The Harm Reduction Journal publishes open-access articles
The CDC has a web page on eliminating racial and ethnic health disparities
The Drug Policy Alliance has a web page on drug policy in the United States
doi:10.1371/journal.pmed.0030452
PMCID: PMC1621100  PMID: 17076569
2.  Ethnic Differences in the Self-Recognition of Obesity and Obesity-Related Comorbidities: A Cross-Sectional Analysis 
Background
Obesity and its related co-morbidities place a huge burden on the health care system. Patients who know they are obese may better control their weight or seek medical attention. Self-recognition may be affected by race/ethnicity, but little is known about racial/ethnic differences in knowledge of obesity’s health risks.
Objective
To examine awareness of obesity and attendant health risks among US whites, Hispanics and African-Americans.
Design
Cross-sectional self-administered survey.
Participants
Adult patients at three general medical clinics and one cardiology clinic.
Main Measures
Thirty-one questions regarding demographics, height and weight, and perceptions and attitudes regarding obesity and associated health risks. Multiple logistic regression was used to quantify the association between ethnicity and obesity awareness, controlling for socio-demographic confounders.
Key Results
Of 1,090 patients who were offered the survey, 1,031 completed it (response rate 95%); a final sample size of 970 was obtained after exclusion for implausible BMI, mixed or Asian ethnicity. Mean age was 47 years; 64% were female, 39% were white, 39% Hispanic and 22% African-American; 48% were obese (BMI ≥30 kg/m2). Among obese subjects, whites were more likely to self-report obesity than minorities (adjusted proportions: 95% of whites vs. 84% of African-American and 86% of Hispanics, P = 0.006). Ethnic differences in obesity recognition disappeared when BMI was >35 kg/m2. African-Americans were significantly less likely than whites or Hispanics to view obesity as a health problem (77% vs. 90% vs. 88%, p < 0.001); African-Americans and Hispanics were less likely than whites to recognize the link between obesity and hypertension, diabetes and heart disease. Of self-identified obese patients, 99% wanted to lose weight, but only 60% received weight loss advice from their health care provider.
Conclusions
African-Americans and Hispanics are significantly less likely to self report obesity and associated health risks. Educational efforts may be necessary, especially for patients with BMIs between 30 and 35.
Electronic supplementary material
The online version of this article (doi:10.1007/s11606-010-1623-3) contains supplementary material, which is available to authorized users.
doi:10.1007/s11606-010-1623-3
PMCID: PMC3101976  PMID: 21222170
obesity; ethnic difference; self recognition
3.  Motivators and Barriers to Blood Donation in African American College Students 
Background
An adequate blood supply depends on volunteer non-remunerated blood donors. African Americans have lower blood donation rates than whites. To improve African American blood donation rates, the motivators and barriers to African Americans must be explored. To study the differences in motivators and barriers to blood donation between donor and non-donor African American college students.
Methods
African Americans college students at two Historically Black Colleges and Universities completed a 41-item, self-administered questionnaire, which assessed participant’s donation frequency, motivators and barriers toward donation, and knowledge and beliefs towards blood donation.
Results
364 primarily female college students (96% African Americans, 93% female) completed the questionnaire. 49% reported prior blood donation experience (donors) and 51% were non-donors. The primary motivator for donors and non-donors was convenience (89% donor, 82% non-donor). Donors were more likely than non-donors to disagree with statements regarding blood donation as being too painful (82% donor, 44% non-donor), resulting in feeling faint, dizzy, or nauseated (61% donor, 29% non-donor). Donors more often agreed that the blood supply is safe (77% donor, 58% non-donor), less often concerned about receiving a transfusion (61% donor, 73% non-donor), and more often aware of local blood shortages (50% donor, 35% non-donor).
Conclusions
African Americans female college students are willing to donate blood given convenience and support from their university. Educational campaigns to increase knowledge regarding the safety of the blood donation process and the ongoing needs of an adequate blood supply might be effective methods to increase blood donation.
doi:10.1016/j.transci.2009.09.005
PMCID: PMC2784155  PMID: 19782000
4.  Racial Differences in Self-Reported Exposure to Information about Hospice Care 
Journal of Palliative Medicine  2009;12(10):921-927.
Abstract
Background
Previous research suggests that lack of knowledge of hospice is a barrier to the use of hospice care by African Americans. However, there is little data examining racial differences in exposure to hospice information.
Objectives
Examine racial differences in self-reported exposure to hospice information and determine how this exposure impacts beliefs about hospice care.
Methods
We surveyed 200 community-dwelling older adults (65 or older). We used Spearman's correlations to examine the relationship between responses to individual items on the Hospice Beliefs and Attitudes Scale (HBAS) and self-reported exposure to hospice information (never heard of hospice, heard a little, or heard a lot). We used multivariate analyses to examine predictors of exposure to hospice information and beliefs about hospice care (total score on HBAS).
Results
Compared to whites (n = 95), African Americans (n = 105) reported significantly less exposure to hospice information (p = 0.0004). Nineteen percent of African Americans and 4% of whites had never heard of hospice; 47.6% of African Americans and 71.6% of whites had heard a lot about hospice. In multivariate analysis controlling for demographics and health status, African Americans had a two times higher odds of reporting that they had never heard of hospice or heard only a little about hospice versus heard a lot about hospice (odds ratio [OR] = 2.24 [1.17, 4.27]. Greater exposure to hospice information was associated with more favorable beliefs about hospice care (outcome: total score on HBAS; parameter estimate 1.34, standard error 0.44, p = 002).
Conclusions
African Americans reported less exposure to information about hospice than whites. Greater exposure to hospice information was associated with more favorable beliefs about some aspects of hospice care. Because knowledge is power, educational programs targeting older African Americans are needed to dispel myths about hospice and to provide minorities with the tools to make informed choices about end-of-life care.
doi:10.1089/jpm.2009.0066
PMCID: PMC2904186  PMID: 19807237
5.  Exploring Perceptions of Colorectal Cancer and Fecal Immunochemical Testing Among African Americans in a North Carolina Community 
Preventing Chronic Disease  2011;8(6):A134.
Introduction
African Americans have a lower colorectal cancer screening rate than whites and higher disease incidence and mortality. Despite wide acceptance of colonoscopy for accurate screening, increasing promotion of high-sensitivity stool test screening, such as the fecal immunochemical test (FIT), may narrow racial, ethnic, and socioeconomic disparities in screening. This study provides formative research data to develop an intervention to increase colorectal cancer screening among underinsured and uninsured African Americans in central North Carolina.
Methods
We held 4 focus groups to explore knowledge, beliefs, and attitudes about colorectal cancer screening, particularly FIT. Participants (n = 28) were African American adults recruited from neighborhoods with high levels of poverty and unemployment. Constructs from the diffusion of innovation theory were used to develop the discussion guide.
Results
In all groups, participants noted that lack of knowledge about colorectal cancer contributes to low screening use. Attitudes about FIT sorted into 4 categories of "innovation characteristics": relative advantage of FIT compared with no screening and with other screening tests; compatibility with personal beliefs and values; test complexity; and test trialability. A perceived barrier to FIT and other stool tests was risk of incurring costs for diagnostic follow-up.
Conclusion
Community-based FIT screening interventions should include provider recommendation, patient education to correctly perform FIT, modified FIT design to address negative attitudes about stool tests, and assurance of affordable follow-up for positive FIT results.
PMCID: PMC3221575  PMID: 22005627
6.  Incorporating ethnicity into genetic risk assessment for Alzheimer disease: the REVEAL study experience 
Purpose
To describe how investigators in a multisite randomized clinical trial addressed scientific and ethical issues involved in creating risk models based on genetic testing for African American participants.
Methods
The following informed our decision whether to stratify risk assessment by ethnicity: evaluation of epidemiological data, appraisal of benefits and risks of incorporating ethnicity into calculations, and feasibility of creating ethnicity-specific risk curves. Once the decision was made, risk curves were created based on data from a large, diverse study of first-degree relatives of patients with Alzheimer disease.
Results
Review of epidemiological data suggested notable differences in risk between African Americans and whites and that Apolipoprotein E genotype predicts risk in both groups. Discussions about the benefits and risks of stratified risk assessments reached consensus that estimates based on data from whites should not preclude enrolling African Americans, but population-specific risk curves should be created if feasible. Risk models specific to ethnicity, gender, and Apolipoprotein E genotype were subsequently developed for the randomized clinical trial that oversampled African Americans.
Conclusion
The Risk Evaluation and Education for Alzheimer Disease study provides an instructive example of a process to develop risk assessment protocols that are sensitive to the implications of genetic testing for multiple ethnic groups with differing levels of risk.
doi:10.1097/GIM.0b013e318164e4cf
PMCID: PMC2483343  PMID: 18344711
Alzheimer; ethnicity; genetics; risk; APOE
7.  Views on Personalized Medicine: Do the Attitudes of African American and White Prescription Drug Consumers Differ? 
Public Health Genomics  2009;13(5):276-283.
Aims
Although recent advances in pharmacogenomics are making possible the use of genetic testing to determine the best medication for patients, little is known about how patients view such procedures. The aims for this study that were developed collaboratively as part of a community-academic partnership are: (1) What are the attitudes and perceptions of prescription drug consumers concerning personalized medicine and genetic testing for drug compatibility and how do they differ between African American and white patients? (2) What are the attitudes and perceptions of patients concerning race-based prescribing and how do they differ between African American and white patients?
Methods
We conducted 6 focus groups, 2 with white participants and 4 with African American participants. Focus groups were audio-recorded, transcribed, and analyzed to ascertain common themes.
Results
Our results suggest that personalized medicine and genetic testing, though not well understood by lay persons, were considered positive advances in medicine. However, participants also voiced concerns about these advances that differed by race.
Conclusion
This study points to the need to include perspectives of at-risk communities as we move toward wider use of this technology.
doi:10.1159/000242199
PMCID: PMC2914357  PMID: 19776555
African Americans; Focus groups; Genetic testing; Personalized medicine; Race-based prescribing
8.  What is the significance of black-white differences in risky sexual behavior? 
A sample of African-American and white young adults were classified as having multiple sex partners or one sexual partner. Subjects with multiple sexual partners were more likely to use drugs and practice risky sexual behaviors such as having anal intercourse, having sexual experiences with a prostitute, and having a history of gonorrhea (P < .001) and genital warts (P < .01). Additional analyses were conducted to determine African-American versus white differences in risky sexual behaviors. Results indicated that whites in the multiple partners and single partner groups were more likely to engage in anal and oral sex, while African Americans were more likely to have sex with prostitutes. Attitudes about the use of condoms differed significantly by multiple partner status (P < .004) and gender (P < .007), but not ethnicity. However, angry reactions about the use of condoms occurred more with African Americans (P < .003) and males (P < .05) than with whites or females. While whites reported a greater use of drugs and a significantly higher level of knowledge about HIV/AIDS, African Americans reported a significantly greater perception of risk for being exposed to human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) (P < .01) and significantly more gonorrhea (P < .10), syphilis (P < .05), and HIV/AIDS (P < .05). No whites in our sample were treated for syphilis nor had they tested positive for HIV/AIDS. On the other hand, 4.5% of the total sample of African Americans reported testing positive for HIV/AIDS. Finally, the results from discriminant analysis indicate that a large number of variables significantly discriminate between subjects who engage in risky sexual behaviors and those who do not. Although there is some similarity in the variables for African Americans and whites, there was tremendous variability between the ethnic groups in the factors that predict risky behaviors. These findings are discussed with reference to the need to develop HIV/AIDS prevention programs for African Americans that are based on data derived from African-American populations rather than from black versus white comparison studies.
PMCID: PMC2607704  PMID: 7807559
9.  Associations between self-referral and health behavior responses to genetic risk information 
Genome Medicine  2015;7(1):10.
Background
Studies examining whether genetic risk information about common, complex diseases can motivate individuals to improve health behaviors and advance planning have shown mixed results. Examining the influence of different study recruitment strategies may help reconcile inconsistencies.
Methods
Secondary analyses were conducted on data from the REVEAL study, a series of randomized clinical trials examining the impact of genetic susceptibility testing for Alzheimer’s disease (AD). We tested whether self-referred participants (SRPs) were more likely than actively recruited participants (ARPs) to report health behavior and advance planning changes after AD risk and APOE genotype disclosure.
Results
Of 795 participants with known recruitment status, 546 (69%) were self-referred and 249 (31%) had been actively recruited. SRPs were younger, less likely to identify as African American, had higher household incomes, and were more attentive to AD than ARPs (all P < 0.01). They also dropped out of the study before genetic risk disclosure less frequently (26% versus 41%, P < 0.001). Cohorts did not differ in their likelihood of reporting a change to at least one health behavior 6 weeks and 12 months after genetic risk disclosure, nor in intentions to change at least one behavior in the future. However, interaction effects were observed where ε4-positive SRPs were more likely than ε4-negative SRPs to report changes specifically to mental activities (38% vs 19%, p < 0.001) and diets (21% vs 12%, p = 0.016) six weeks post-disclosure, whereas differences between ε4-positive and ε4-negative ARPs were not evident for mental activities (15% vs 21%, p = 0.413) or diets (8% versus 16%, P = 0.190). Similarly, ε4-positive participants were more likely than ε4-negative participants to report intentions to change long-term care insurance among SRPs (20% vs 5%, p < 0.001), but not ARPs (5% versus 9%, P = 0.365).
Conclusions
Individuals who proactively seek AD genetic risk assessment are more likely to undergo testing and use results to inform behavior changes than those who respond to genetic testing offers. These results demonstrate how the behavioral impact of genetic risk information may vary according to the models by which services are provided, and suggest that how participants are recruited into translational genomics research can influence findings.
Trial registration
ClinicalTrials.gov NCT00089882 and NCT00462917
Electronic supplementary material
The online version of this article (doi:10.1186/s13073-014-0124-0) contains supplementary material, which is available to authorized users.
doi:10.1186/s13073-014-0124-0
PMCID: PMC4311425  PMID: 25642295
10.  Comparison of knowledge and attitudes toward cancer among African Americans 
Infectious Agents and Cancer  2009;4(Suppl 1):S15.
Background
It has been noted that the African American population in the U.S. bears disproportionately higher cancer morbidity and mortality rates than any racial and ethnic group for most major cancers. Many studies also document that decreased longevity is associated with low educational attainment and other markers of low socioeconomic status (SES), both of which are prevalent in African American communities across the nation. Evidence suggests that this phenomenon may be due to attitudes that reflect a lack of knowledge surrounding facts about cancer awareness and prevention. This study was designed to yield data concerning the general population's attitudes toward cancer, taking into consideration racial and/or socioeconomic differences in the population studied.
Results
Two hundred and fifteen subjects participated in the survey, of which 74% (159/215) defined themselves as African-American, 20% were White, and 6% were of other races. While only 38% of the study population was able to identify at least 5 risk factors associated with cancer, a lower proportion of African Americans identified at least 5 risk factors than whites (34% vs. 53%, p = 0.03). In addition, a slightly higher percentage of African Americans (10%) were not aware of the definition of a clinical trial when compared to whites (8%, p > 0.1). Of those aware of the definition of a clinical trial, African Americans were more reluctant to participate in clinical trials, with 53% answering no to participation compared to 15% of whites (p = 0.002).
Conclusion
When comparing results to a similar study conducted in 1981, a slight increase in cancer knowledge in the African American population was observed. Our results suggest that while knowledge of cancer facts has increased over the years amongst the general population, African Americans and lower income populations are still behind. This may affect their risk profile and cancer early detection.
doi:10.1186/1750-9378-4-S1-S15
PMCID: PMC2638460  PMID: 19208206
11.  Ethnic differences in the caregiver’s attitudes and preferences about the treatment and care of advanced lung cancer patients 
Psycho-oncology  2011;21(11):1250-1253.
Objective
This study examined differences in attitudes and preferences between African American and White caregivers about cancer treatment and care.
Methods
There were 173 White and 26 African American caregivers of advanced lung cancer patients who were recruited as a convenience sample. A telephone interview was conducted to collect information using a semi-structured questionnaire. Using logistic regression, we examined differences between racial groups concerning therapeutic and caregiving issues controlling for socioeconomic and demographic variables.
Results
The regression analyses showed that African American caregivers had higher expectations for treatment outcomes (p≤0.05) but poorer understanding of hospice and a stronger preference for hospice care outside the home (p≤0.05). They were more likely to believe that the patient communicates with the family about cancer treatment to meet the family’s expectations rather than seek emotional support (p≤0.01). They were also more reluctant to endorse children’s responsibility to make a treatment decision and are less likely to be fully satisfied with the decision-making process (p≤0.05).
Conclusions
The findings suggest some differences in beliefs and cultural values between African American and White caregivers. African American caregivers appear to believe more in the possibility of curative care for advanced lung cancer and eschew hospice care. The findings inform possible challenges regarding communication about end-of-life treatment and care with African American caregivers and a need for the provision of adequate information and education.
doi:10.1002/pon.2031
PMCID: PMC3612394  PMID: 21834024
African American; cancer; oncology; decision making; health disparity
12.  Knowledge of the Tuskegee study and its impact on the willingness to participate in medical research studies. 
The under-representation of racial/ethnic minorities among medical research participants has recently resulted in mandates for their inclusion by the National Institutes of Health (NIH). Therefore, there is a need to determine how history, attitudes, cultural beliefs, social issues, and investigator behavior affect minority enrollment in medical research studies. From January 1998 to March 1999, 179 African-American and white residents of the Detroit Primary Metropolitan Statistical Area (PMSA) participated in a mail and telephone survey designed to examine impediments to African-American participation in medical research studies. Chi-square tests were performed to assess differences between the study groups using the Survey Data Analysis Program (SUDAAN). Eighty-one percent of African Americans and 28% of whites had knowledge of the Tuskegee Study (p = <0.001). Knowledge of the Tuskegee Study resulted in less trust of researchers for 51% of African-Americans and 17% of whites (p = 0.02). Forty-six percent of African-Americans and 34% of whites indicated that their knowledge of the study would affect future research participation decisions (p = 0.25). Of these, 49% of African-Americans and 17% of whites would not be willing to participate in future medical research studies (p = 0.05). This study confirms the need for medical researchers to confront the issue of the Tuskegee Study and its continuing impact on African-Americans' trust of medical research studies.
PMCID: PMC2568333  PMID: 11202759
13.  Misinformation and misbeliefs in the Tuskegee Study of Untreated Syphilis fuel mistrust in the healthcare system. 
The Tuskegee Study of Untreated Syphilis (TSUS) is an important issue in research, healthcare, ethics and race relations. The assumed consequences of knowledge of this study on the African-American community include mistrust of the healthcare system. In the July 2005 issue of the Journal of the National Medical Association, Brandon, Isaac and LaVeist (the authors), who were at the Center for Health Disparities Solutions, Johns Hopkins Bloomberg School of Public Health, reported the results of black-white differences in awareness of and knowledge about the TSUS and the effect of that awareness and knowledge on medical mistrust. The study surveyed blacks, whites and others in the Baltimore, MD community about their knowledge of and attitudes about the TSUS. The respondents who were aware of the TSUS were asked survey items to assess specific factual information about the TSUS. The respondents who were not aware of the TSUS were read a brief description of the TSUS taken from the CDC website. Both groups were asked if a similar study was possible today. The authors performed a regression analysis of mistrust of medical care based on race, knowledge of the TSUS and demographic variables. The editorial identified and explained challenges in the article, i.e., challenges in calculations, demographic analysis by race, knowledge of TSUS, cultural sensitivity and methodology. The authors miscalculated the "similar proportions" of blacks and whites who were aware of the TSUS; the recalculated proportions, favoring whites, were different than reported by others. There was no demographic analysis by race in their article--also different than other published reports. Most respondents--blacks and whites--who were aware of the TSUS at baseline answered incorrectly the author-selected questions about the TSUS, particularly the fact-based question of whether the TSUS researchers gave syphilis to the men-not dissimilar to one other report. The source for TSUS information (the CDC website) that was used to educate respondents who were not aware of the TSUS at baseline had contradictions, errors and challenges in black history, medical and public health history, and women's studies. The content of what was actually read to respondents was unknown. Proportionally more whites who were not aware of the TSUS but who were read author-selected information about the TSUS believed that a similar study could happen today-a belief and possibly mistrust of medical care that appeared to be induced-compared to whites with prestudy awareness of the TSUS but not read information from the CDC website. Both black groups were not dissimilar from each other. The authors used a survey that measured a race difference in response to a medical event (TSUS) specific to only one racial group (blacks) when there were inclusive examples specific to other groups available. The authors used "Tuskegee" as a single-word sound bite for the TSUS--a misuse that was inappropriate in scientific and research discourse and that may fuel mistrust of medical care. Whether knowledge of the TSUS was a predictor of mistrust of the healthcare system was inconclusive based on the results in the authors' article. The core findings of the article made believing their case difficult. The editorial suggested that bias and misinformation in undertaking, analysis and reporting the study may in itself fuel mistrust in medical care in the community. Because of these challenges, the editorial urged caution with regard to any change in research direction or policy debate based on the results reported in the article.
PMCID: PMC2594917  PMID: 16334509
14.  Cultural Beliefs and Mental Health Treatment Preferences of Ethnically Diverse Older Adult Consumers in Primary Care 
Background
Beliefs concerning the causes of mental illness may help explain why there are significant disparities in the rates of formal mental health service use among racial/ethnic minority elderly as compared with their Caucasian counterparts. This study applies the Cultural Influences on Mental Health framework to identify the relationship between race/ethnicity and differences in: (1) beliefs on the cause of mental illness; (2) preferences for type of treatment; and (3) provider characteristics.
Method
Analyses were conducted using baseline data collected from participants who completed the Cultural Attitudes toward Healthcare and Mental Illness Questionnaire, developed for the PRISM-E (Primary Care Research in Substance Abuse and Mental Health for the Elderly) study, a multi-site randomized trial for older adults (65+) with depression, anxiety, or at-risk alcohol consumption. The final sample consisted of 1257 non-Latino Whites, 536 African-Americans, 112 Asian-Americans, and 303 Latinos.
Results
African-Americans, Asian-Americans, and Latinos had differing beliefs regarding the causes of mental illness when compared to Non-Latino Whites. Race/ethnicity was also associated with determining who makes healthcare decisions, treatment preferences, and preferred characteristics of healthcare providers.
Conclusions
This study highlights the association between race/ethnicity and health beliefs, treatment preferences, healthcare decisions, and consumers' preferred characteristics of healthcare providers. Accommodating the values and preferences of individuals can be helpful in engaging racial/ethnic minority patients in mental health services.
doi:10.1097/JGP.0b013e318227f876
PMCID: PMC3258470  PMID: 21992942
race/ethnicity; health beliefs; older adults
15.  HIV Knowledge and its Contribution to Sexual Health Behaviors of Low-Income African American Adolescents 
Objectives
Although many factors contribute to racial disparities in HIV/AIDS among young African Americans, knowledge is a particularly modifiable factor. However, little information has been published about the current HIV knowledge of African American teens or to what extent knowledge independently contributes to their sexual behavior and health. This study aimed to describe the level of knowledge among this at-risk population and determine whether knowledge contributes to variance in sexual behavior and health beyond that of sociodemographic and psychological factors.
Methods
African American adolescents (n = 1,658) were recruited in two northeast and two southeast U.S. cities (74% eligible for free/reduced-price school lunch). Analyses utilized data gathered from adolescents using an audio computer-assisted self-interview (ACASI) program.
Results
On average, participants answered only 50% of HIV knowledge items correctly and were least accurate concerning effective condom use and HIV testing. Controlling for associated sociodemographic and psychological factors, greater knowledge was associated with sexual experience and, among experienced adolescents, with STI/HIV testing and, unexpectedly, less condom use.
Conclusions
HIV knowledge, which is modifiable, is limited among at-risk African American adolescents and is an important contributor to sexual behavior and health. Findings indicate a need for more comprehensive HIV/AIDS education, particularly with regard to condom use and the benefits of routine STI/HIV testing. Although knowledge might not be sufficiently protective in and of itself, having accurate information about HIV may benefit sexual health by impacting health-promoting attitudes necessary for successful engagement in healthcare-seeking behavior.
PMCID: PMC3095017  PMID: 21287898
HIV knowledge; HIV testing; condom use; African American; sexual health
16.  Regional differences in awareness and attitudes regarding genetic testing for disease risk and ancestry 
Human Genetics  2010;128(3):249-260.
Little is known about the lay public’s awareness and attitudes concerning genetic testing and what factors influence their perspectives. The existing literature focuses mainly on ethnic and socioeconomic differences; however, here we focus on how awareness and attitudes regarding genetic testing differ by geographical regions in the US. We compared awareness and attitudes concerning genetic testing for disease risk and ancestry among 452 adults (41% Black and 67% female) in four major US cities, Norman, OK; Cincinnati, OH; Harlem, NY; and Washington, DC; prior to their participation in genetic ancestry testing. The OK participants reported more detail about their personal ancestries (p = 0.02) and valued ancestry testing over disease testing more than all other sites (p < 0.01). The NY participants were more likely than other sites to seek genetic testing for disease (p = 0.01) and to see benefit in finding out more about one’s ancestry (p = 0.02), while the DC participants reported reading and hearing more about genetic testing for African ancestry than all other sites (p < 0.01). These site differences were not better accounted for by sex, age, education, self-reported ethnicity, religion, or previous experience with genetic testing/counseling. Regional differences in awareness and attitudes transcend traditional demographic predictors, such as ethnicity, age and education. Local sociocultural factors, more than ethnicity and socioeconomic status, may influence the public’s awareness and belief systems, particularly with respect to genetics.
doi:10.1007/s00439-010-0845-0
PMCID: PMC2940428  PMID: 20549517
17.  Stigmatizing Attitudes towards Mental Illness among Racial/Ethnic Older Adults in Primary Care 
Objective
The current study applies the perceived stigma framework to identify differences in attitudes toward mental health and mental health treatment among various racial/ethnic minority older adults with common mental health problems including depression, anxiety disorders, or at-risk alcohol use. Specifically, this study examines to what extent race/ethnicity is associated with differences in: (1) perceived stigma of mental illness; and (2) perceived stigma for different mental health treatment options.
Methods
Analyses were conducted using baseline data collected from participants who completed the SAMHSA Mental Health and Alcohol Abuse Stigma Assessment, developed for the PRISM-E (Primary Care Research in Substance Abuse and Mental Health for the Elderly) study, a multi-site randomized trial for older adults (65+) with depression, anxiety, or at-risk alcohol consumption. The final sample consisted of 1247 non-Latino Whites, 536 African-Americans, 112 Asian-Americans, and 303 Latinos.
Results
African-Americans and Latinos expressed greater comfort in speaking to primary care physicians or mental health professionals concerning mental illness compared to non-Latino Whites. Asian-Americans and Latinos expressed greater shame and embarrassment about having a mental illness than non-Latino Whites. Asian-Americans expressed greater difficulty in seeking or engaging in mental health treatment.
Conclusions
Racial/ethnic differences exist among older adults with mental illness with respect to stigmatizing attitudes towards mental illness and mental health treatment. Results of this study could help researchers and clinicians educate racial/ethnic minority older adults about mental illness and engage them in much needed mental health services.
doi:10.1002/gps.3928
PMCID: PMC3672370  PMID: 23361866
race/ethnicity; stigma; older adults
18.  Engaging diverse populations about biospecimen donation for cancer research 
Journal of Community Genetics  2014;5(4):313-327.
Clinical research increasingly relies upon the availability of appropriate genetic materials; however, the proportion of biospecimens from racial/ethnic minority patients and healthy controls are underrepresented, which preclude equitable research across all patient groups for cancer treatment. National Cancer Institute-funded Community Network Program Centers in California, Florida, and New York collaborated with local community partners to conduct three independent formative research studies with diverse (African American, Asian American, Hispanic, and White) participants to explore their knowledge, attitudes, and beliefs about biobanking, and their experiences with the donation of biospecimens. Our findings demonstrated similarities in overall low knowledge and understanding about the use of biospecimens for research. This was exacerbated for non-English speakers. Racial and ethnic groups differed with regard to a number of factors that are obstacles for participation, e.g., continuing medical mistrust (African Americans), lack of benefit (Hispanics), apprehension about the physical toll of donating (Vietnamese), usage of biospecimen for research (Hmong and Chinese), and suspicion of exploitation by corporate entities (Whites). However, participants uniformly reported general interest and willingness to participate in biobanking for altruistic purposes, particularly to benefit future generations. This interest was framed with a strong admonition that donations should be accompanied by transparency about study sponsorship and ownership, distribution and use of biospecimens, and study information that fit participants’ backgrounds and experiences. This cross-cultural regional analysis offers significant insights into the similarities and variations in opinions and perceptions about biobanking and the collection of biospecimens for use in cancer research.
doi:10.1007/s12687-014-0186-0
PMCID: PMC4159470  PMID: 24664489
Biobanking; Biospecimens; Asian Americans; African Americans; Hispanics; Medically underserved
19.  Knowledge, beliefs, and risk factors for osteoporosis among African-American and Hispanic women. 
The purpose of this work was to develop and conduct a needs and risk instrument to assess knowledge of osteoporosis risk factors, identify beliefs and attitudes about this disease, and delineate the presence and/or absence of healthy behaviors associated with osteoporosis among African American and Hispanic women. The survey findings suggest that African-American and Hispanic women are not well-versed in behaviors that would promote and maintain optimal bone mass. Consequently, they are not practicing appropriate lifestyle and dietary habits to decrease their risk of osteoporosis. Such behaviors include inadequate physical activity, inadequate calcium intake, cigarette smoking, and long-term steroid use. Less than 10% of women in the study were getting adequate daily dietary calcium intake, with only 13% taking daily calcium supplements to augment this deficit and less than one-half of women exercising at a minimal level (20 minutes/3 times a week). Women in this study also had limited knowledge about osteoporosis, perceived this condition to be less of a health threat as compared to breast cancer, heart disease, diabetes, and Alzheimer's disease, and very few had the perception that being Hispanic or African American was a factor to consider in assessing their risk of osteoporosis. Our findings suggest that osteoporosis education and prevention initiatives are needed, specifically for African-American and Hispanic women, to promote healthy behaviors, identify women at-risk, and encourage early diagnosis and treatment.
PMCID: PMC2640611  PMID: 12653376
20.  African American, Chinese, and Latino Family Caregivers’ Impressions of the Onset and Diagnosis of Dementia: Cross-Cultural Similarities and Differences 
The Gerontologist  2005;45(6):783-792.
Purpose
We explored cross-cultural similarities and differences in minority family caregivers’ perceptions of the onset and diagnosis of Alzheimer’s disease in their relatives, with specific attention to clinical encounters.
Design and Methods
We performed a meta-synthesis of three qualitative studies conducted in Massachusetts with 22 African American, Latino, and Chinese caregivers.
Results
All participants conveyed striking similarities of thought about normalization of cognitive symptoms until one critical event, usually relocation, precipitated family awareness that an elder’s behavior was not the result of ‘‘normal aging.’’ A lack of knowledge about Alzheimer’s disease, rather than culturally influenced beliefs, was the major deterrent to having an elder’s memory assessed. Community physicians’ failure to recognize Alzheimer’s disease or refer to specialists was more problematic than language or ethnic differences. Physicians’ disrespect for caregivers’ concerns about memory loss was particularly noted by African Americans, stigmatization of persons with Alzheimer’s disease was noted by Chinese, and fears that acculturation would end family home care was noted by Latinos.
Implications
Amid ethnocultural differences, there are many similarities in needs that offer providers the possibility to unify quality improvements in Alzheimer’s disease outreach, education, and physicians’ services. Suggestions include providing the public with more confidential access to Alzheimer’s disease information, increasing dementia awareness among community physicians, motivating clinicians to adopt culturally sensitive communication patterns, and providing community education to reduce normalization by families and stigmatization of persons with Alzheimer’s disease.
PMCID: PMC1629080  PMID: 16326660
Alzheimer’s disease; Cultural competence; Race or ethnicity; Meta-synthesis
21.  HPV knowledge, attitudes, and cultural beliefs among Hispanic men and women living on the Texas-Mexico Border 
Ethnicity & health  2009;14(6):607-624.
Background
U.S., Hispanic women have higher cervical cancer incidence rates than non-Hispanic Whites and African Americans and lower rates of cervical cancer screening. Knowledge, attitudes, and cultural beliefs may play a role in higher rates of infection of HPV and decisions about subsequent diagnosis and treatment of cervical cancer.
Study aim
To explore the level of HPV knowledge, attitudes, and cultural beliefs among Hispanic men and women on the Texas-Mexico border.
Methodological Approach
Informed by feminist ethnography, the authors used an interpretive approach to understand local respondents' concerns and interests. Focus group sessions were analyzed using thematic content analysis.
Recruitment and sample
Promotoras (lay health workers) recruited participants using convenience sampling methods. Group sessions were held in public service centers in Brownsville. Participants' ages ranged from 19 to 76 years.
Methods analysis
Focus group discussions were audio-recorded and transcribed in Spanish. Researchers read and discussed all the transcripts and generated a coding list. Transcripts were coded using ATLAS.ti 5.0.
Key findings
Participants had little understanding about HPV and its role in the etiology of cervical cancer. Attitudes and concerns differed by gender. Women interpreted a diagnosis of HPV as a diagnosis of cancer and expressed fatalistic beliefs about its treatment. Men initially interpreted a diagnosis of HPV as an indication of their partners' infidelity, but after reflecting upon the ambiguity of HPV transmission, attributed their initial reaction to cultural ideals of machismo. Men ultimately were interested in helping their partners seek care in the event of a positive diagnosis.
Implications for practice
Results suggest that understanding Hispanics' cultural norms and values concerning disease, sexuality, and gender is essential to the design and implementation of preventive interventions for HPV and cervical cancer.
doi:10.1080/13557850903248621
PMCID: PMC2874420  PMID: 19953392
qualitative; focus groups; Texas-Mexico border; HPV; cervical cancer; Pap test; Hispanics; Latinos; fatalism; machismo; cultural beliefs
22.  Understanding preventive behaviors among mid-Western African-American men: a pilot qualitative study of prostate screening 
Journal of men's health  2011;8(2):140-151.
Background
African-American men bear a disproportionate burden for disease compared to other ethnic and racial groups. Due to gender differences in socialization and lifestyle practices, men are more likely to adopt attitudes and beliefs that undermine their health and well-being, including beliefs related to masculinity. The purpose of this study was to explore and understand the contextual factors in the attitudes and beliefs of African-American men's view of health in general, and as related to prostate cancer in particular.
Methods
Qualitative data from 15 African-American men were collected from two focus groups and analyzed for common themes using a qualitative descriptive design.
Results
Three themes emerged that focused on the beliefs and attitudes regarding general health and prostate cancer screening: (i) traditional beliefs about masculinity; (ii) psychosocial impact from family medical history; and (iii) sexual mores regarding digital rectal exams.
Conclusions
The socialization of African-American men and masculinity ideologies may be significant factors in the focus group member's decisions to seek preventive health behavior changes. Further research is needed to examine the determinants of African-American men's health seeking behavior, in particular on the influence of masculine beliefs.
doi:10.1016/j.jomh.2011.03.005
PMCID: PMC3129985  PMID: 21743817
Preventive health behaviors; Focus groups; African American; Men's health
23.  African ancestry protects against Alzheimer's disease-related neuropathology 
Molecular Psychiatry  2011;18(1):79-85.
Previous studies in dementia epidemiology have reported higher Alzheimer's disease rates in African-Americans when compared with White Americans. To determine whether genetically determined African ancestry is associated with neuropathological changes commonly associated with dementia, we analyzed a population-based brain bank in the highly admixed city of São Paulo, Brazil. African ancestry was estimated through the use of previously described ancestry-informative markers. Risk of presence of neuritic plaques, neurofibrillary tangles, small vessel disease, brain infarcts and Lewy bodies in subjects with significant African ancestry versus those without was determined. Results were adjusted for multiple environmental risk factors, demographic variables and apolipoprotein E genotype. African ancestry was inversely correlated with neuritic plaques (P=0.03). Subjects with significant African ancestry (n=112, 55.4%) showed lower prevalence of neuritic plaques in the univariate analysis (odds ratio (OR) 0.72, 95% confidence interval (CI) 0.55–0.95, P=0.01) and when adjusted for age, sex, APOE genotype and environmental risk factors (OR 0.43, 95% CI 0.21–0.89, P=0.02). There were no significant differences for the presence of other neuropathological alterations. We show for the first time, using genetically determined ancestry, that African ancestry may be highly protective of Alzheimer's disease neuropathology, functioning through either genetic variants or unknown environmental factors. Epidemiological studies correlating African-American race/ethnicity with increased Alzheimer's disease rates should not be interpreted as surrogates of genetic ancestry or considered to represent African-derived populations from the developing nations such as Brazil.
doi:10.1038/mp.2011.136
PMCID: PMC3526728  PMID: 22064377
Alzheimer's disease; ancestry; dementia; ethnicity; neuropathology; race
24.  A Comprehensive Genetic Association Study of Alzheimer Disease in African Americans 
Archives of Neurology  2011;68(12):1569-1579.
Objectives
To evaluate the association of genetic variation with late-onset Alzheimer disease (AD) in African Americans, including genes implicated in recent genome-wide association studies of whites.
Design
We analyzed a genome-wide set of 2.5 million imputed markers to evaluate the genetic basis of AD in an African American population.
Subjects
Five hundred thirteen well-characterized African American AD cases and 496 cognitively normal African American control subjects.
Setting
Data were collected from multiple sites as part of the Multi-Institutional Research on Alzheimer Genetic Epidemiology (MIRAGE) Study and the Henry Ford Health System as part of the Genetic and Environmental Risk Factors for Alzheimer Disease Among African Americans (GenerAAtions) Study.
Results
Several significant single-nucleotide polymorphisms (SNPs) were observed in the region of the apolipoprotein E gene (APOE). After adjusting for the confounding effects of APOE genotype, one of these SNPs, rs6859 in PVRL2, remained significantly associated with AD (P=.0087). Association was also observed with SNPs in CLU, PICALM, BIN1, EPHA1, MS4A, ABCA7, and CD33, although the effect direction for some SNPs and the most significant SNPs differed from findings in data sets consisting of whites. Finally, using the African American genome-wide association study data set as a discovery sample, we obtained suggestive evidence of association with SNPs for several novel candidate genes.
Conclusions
Some genes contribute to AD pathogenesis in both white and African American cohorts, although it is unclear whether the causal variants are the same. A larger African American sample will be needed to confirm novel gene associations, which may be population specific.
doi:10.1001/archneurol.2011.646
PMCID: PMC3356921  PMID: 22159054
25.  Perceptions About Genetic Testing for the Susceptibility to Alcohol Dependence and Other Multifactorial Diseases 
Background
Beliefs, attitudes, and preferences about the risk and benefits of genetic testing are important determinants of willingness to undergo testing. Aims: The purpose of this study was to evaluate the perceived importance of genetic testing for alcohol dependence compared with other multifactorial diseases among African Americans. Methods: Surveys were conducted with 258 participants using the Genetic Psycho-Social Implications (GPSI) questionnaire to evaluate several areas of hypothetical genetic testing for alcohol dependence. Respondents were divided into two groups: those who perceived testing for alcohol dependence to be equally important as testing for cancer and those who did not. Using chi-square, the groups' responses were compared for nine GPSI items measuring beliefs about the severity of alcohol dependence, general benefits of genetic testing, and specific benefits of genetic testing for diabetes, hypertension, or a disease affecting a family member. Results: Nearly 86% of respondents believed that genetic testing for alcoholism was equally as important as testing for cancer. Those who reported parity of importance of alcohol dependence and cancer screening were more likely to believe that alcoholism is a deadly disease (p<0.001) and genetic testing influences health (p<0.001). Conclusion: African Americans reported favorable attitudes and beliefs in possible availability of susceptibility genetic testing for alcohol dependence. The perceived importance of testing for alcohol dependence was associated with beliefs about the severity of alcoholism and certain benefits of genetic testing in general.
doi:10.1089/gtmb.2011.0069
PMCID: PMC3378024  PMID: 22191677

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