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?
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.
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.
This study points to the need to include perspectives of at-risk communities as we move toward wider use of this technology.
African Americans; Focus groups; Genetic testing; Personalized medicine; Race-based prescribing
Debate exists regarding differences in the prevalence of Alzheimer’s disease (AD) in African Americans and Hispanics in the United States, with some evidence suggesting that the prevalence of AD may be considerably higher in these groups than in non-Hispanic whites. Despite this possible disparity, patients of minority ethnoracial groups often receive delayed diagnosis or inadequate treatment for dementia. This review investigates these disparities by conceptualizing the dementia disease process as a product of both biological and cultural factors. Ethnoracial differences in biological risk factors, such as genetics and cardiovascular disease, may help to explain disparities in the incidence and prevalence of AD, while race-specific cultural factors may impact diagnosis and treatment. Cultural factors include differences in perceptions about what is normal aging and what is not, lack of adequate access to medical care, and issues of trust between minority groups and the medical establishment. The diagnosis of AD in diverse populations may also be complicated by racial biases inherent in cognitive screening tools widely used by clinicians, but controlling for literacy level or using savings scores in psychometric analyses has the potential to mitigate these biases. We also suggest that emerging biomarker-based diagnostic tools may be useful in further characterizing diverse populations with AD. Recognizing the gap in communication that exists between minority communities and the medical research community, we propose that education and outreach are a critical next step in the effort to understand AD as it relates to diverse populations.
Alzheimer’s disease; ethnic groups; health disparities; literacy
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.
To examine awareness of obesity and attendant health risks among US whites, Hispanics and African-Americans.
Cross-sectional self-administered survey.
Adult patients at three general medical clinics and one cardiology clinic.
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.
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.
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.
obesity; ethnic difference; self recognition
Historically, minority groups have been underrepresented in research and clinical trials. The lack of participation by minorities has been attributed to variety of factors including a mistrust of the predominately white research establishments and a lack of education about the purpose of research. The current study was designed to determine African-American interest in Alzheimer’s disease (AD) research and to recruit African Americans as normal controls in current AD studies with the goal of eventually gaining consent for brain donation upon death. Participants were 46 African Americans aged 65 or older who were interviewed about knowledge of medical procedures and experience with research. After initial recruitment interviews, 31.7% of participants agreed to yearly testing with eventual brain donation. Study findings suggest a moderate relationship between participants’ knowledge of medical procedures used to prolong life and willingness to donate one’s brain.
African American; research participation; minorities; brain donation; recruitment; retention
This article examines the risky sexual behaviors, condom and drug usage, sexually transmitted diseases (STDs), and attitudes of African-American college students with the human immunodeficiency virus (HIV), which is the precursor of the acquired immunodeficiency syndrome (AIDS). A total of 408 (199 males, 209 females) African-American college students, representing 75% of the students enrolled in a southern university, were surveyed. The results revealed that 3.18% of the students reported having HIV/AIDS. The students with HIV/AIDS exhibited significant deficits in AIDS knowledge, particularly information concerning the transmission of HIV/AIDS. While subjects with HIV/AIDS did not differ from subjects without HIV/AIDS with regard to their perceived risk of being exposed to AIDS or their attitudes about using condoms, a significantly larger percentage of subjects with HIV/AIDS reported that they "always" used condoms with their partner. Nevertheless, subjects with HIV/AIDS were more likely to engage in anal intercourse, experience sex with prostitutes, and use drugs. Sexually transmitted diseases were more prevalent among subjects with HIV/AIDS, and syphilis was found to be the best predictor of HIV/AIDS.
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.
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.
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.
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.
Alzheimer; ethnicity; genetics; risk; APOE
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.
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.
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.
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.
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.
We analyzed a genome-wide set of 2.5 million imputed markers to evaluate the genetic basis of AD in an African American population.
Five hundred thirteen well-characterized African American AD cases and 496 cognitively normal African American control subjects.
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.
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.
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.
Multiple sclerosis (MS) is an autoimmune demyelinating disease characterized by complex genetics and multifaceted gene-environment interactions. Compared to whites, African Americans have a lower risk for developing MS, but African Americans with MS have a greater risk of disability. These differences between African Americans and whites may represent differences in genetic susceptibility and/or environmental factors. SNPs from 12 candidate genes have recently been identified and validated with MS risk in white populations. We performed a replication study using 918 cases and 656 unrelated controls to test whether these candidate genes are also associated with MS risk in African Americans. CD6, CLEC16a, EVI5, GPC5, and TYK2 contained SNPs that are associated with MS risk in the African American dataset. EVI5 showed the strongest association outside the MHC (rs10735781, OR = 1.233, 95% CI = 1.06–1.43, P value = 0.006). In addition, RGS1 appears to affect age of onset whereas TNFRSF1A appears to be associated with disease progression. None of the tested variants showed results that were statistically in-consistent with the effects established in whites. The results are consistent with shared disease genetic mechanisms among individuals of European and African ancestry.
Knowledge of cancer prevention and control was defined in terms of prevention, etiology, treatment, symptoms, cancer rates, screening, and detection examinations. A survey of 86 African Americans and 68 white Americans in Alameda County, California was completed in 1985. An index comprised of 69 knowledge items was assessed. A multivariate analysis of race, education, socioeconomic status, and occupation confirmed that these characteristics were independent predictors of knowledge. Blue collar work status was the most important predictor of low knowledge levels. African Americans were less knowledgeable than white Americans with regard to diet in preventing cancer and treatment modalities for cancer, and were most likely to perceive surgery as contributing to metastases. Low education and income status predicted low levels of knowledge. An important consideration in changing knowledge levels is the need to translate technical information about treatment and metastases in ways that are effective in reaching target populations at risk for low levels of knowledge. Cancer prevention and control programs need to develop materials and strategies that are responsive to communities whose members are predominantly African Americans or blue collar workers, or have low levels of education and income.
BACKGROUND: Genetic testing has the potential to identify persons at high risk for disease. Given the history of racial disparities in screening, early detection and accessing treatment, understanding racial differences in beliefs about genetics is essential to preventing disparities in some conditions. METHODS: In 2004, a sample of older adult patients from four inner-city health centers was surveyed to assess beliefs about genetic determinants of disease, genetic testing and religion. Logistic regression determined which beliefs were associated with race. RESULTS: Of the 314 respondents, 50% were African Americans. Most respondents thought that sickle cell disease, cystic fibrosis and diabetes are primarily genetic. African Americans were more likely than Caucasians to believe that genetic testing will lead to racial discrimination (Odds ratio (OR): 3.02, 95% confidence interval (CI): 1.5-6.0) and to think that all pregnant women should have genetic tests (OR=3.8, 95% CI: 1.7-8.6). African Americans were more likely to believe that God's Word is the most important source for moral decisions (OR: 3.6, 95% CI :1.5-8.7). CONCLUSION: African Americans and Caucasians differ in beliefs about genetic testing and the basis for moral decision-making. Acknowledging and understanding these differences may lead to better medical care.
Despite recognition that the African American population is underrepresented in studies of health and mental health treatment and prevention efforts, few investigations have systematically examined barriers to African American research participation. Without their participation, treatment and prevention strategies designed to curtail the spread of HIV in their communities will be bound to achieve less than optimal outcomes. Based on the assumption that successful recruitment of African Americans requires knowledge of (a) their beliefs about research, (b) their perceptions of the research process and researchers, (c) their motivations to participate, and (d) the historical and social factors that may be the source of at least some ambivalence, the current study undertook semi-structured interviews with 157 African American, low-income mothers residing in a large urban community where they and their children were at high risk for HIV. Given the sensitive nature of the research topic, members of the community were trained to conduct the interviews. Qualitative and quantitative analyses of the interview content suggest that despite having been consented, many participants (a) are not aware of their rights under informed consent and (b) lack knowledge of how the research will be used. Despite this and the subtle suspicion of White researchers held by some, many decide to participate for altruistic reasons. The implications for recruitment of participants in general and African Americans in particular into HIV prevention studies are discussed as are the implications for service providers directly or indirectly involved in the development and delivery of these interventions.
Examine barriers to participation; implications of recruitment; implications for service; providers; under representation of African American population; low-income mothers at high risk
African-American men die from prostate cancer at higher rates than white men, a health disparity that may result from differences in knowledge and beliefs about prostate cancer and screening. Studies conflict on whether race or socioeconomic status affects knowledge of prostate cancer and screening. This study compared education, race, and screening status to determine how each factor alone or together shape men’s knowledge of prostate cancer and screening.
In-depth interviews were conducted with 65 African-American and white men with diverse education backgrounds, aged 40–64.
Education, not race or screening status, was associated with knowledge about the prostate gland, prostate cancer symptoms and screening tests, and fear of prostate cancer. The exception was knowledge about the prostate specific antigen blood test which was associated with education and screening status.
Education, not race, is associated with prostate cancer and screening knowledge. Interventions should focus on all men with low education to correct their misinformation about prostate cancer and to engage them in shared decision making about screening.
prostate cancer; prostate cancer screening; health disparities; African-American
Vast disparities in oral health status coupled with projected decreases in African Americans enrolling in and graduating from dental school have heightened concern about the underrepresentation of African Americans in the dental profession. The purpose of this study was to explore differences between African-American and white American students regarding demographics, professional motivations, and career plans. African-American (n = 104) and white American (n = 226) dental students completed a biographical data survey instrument, which included information about family background and professional motivations and plans, and rated descriptions of three practice arrangements. African-American students were more motivated to become a dentist to serve the public, plan to specialize, work in an urban area, and work part-time. White American students were more motivated to become a dentist based on factors related to family commitments. Race was a significant predictor for student ratings for both solo and employee practice. Study results have implications for health professions educators, administrators, and policy makers in their efforts to improve the recruitment and retention of African-American students, shape dental curricula to meet diverse student needs, and implement loan forgiveness programs to enhance minority student recruitment.
The National Institute of Mental Health’s effort to rectify the underrepresentation of American Blacks in the genetic studies of psychiatric disorders has met with mixed success. This study was designed to understand some of the barriers to recruitment.
Men and women, who were of Black, White or Hispanic race/ethnicity, aged 18–79 years (Nλ=λ353), were recruited from clinical and community settings in New York City Participants responded to a survey that was designed to measure willingness to participate and attitudes toward genetic research. Principal components analyses generated eight factors including perceived benefits, concerns about, and drawbacks of genetic research, and beliefs about genetic or environmental contributions to psychopathology. Analysis of variance assessed within-ethnic group differences on factor scores, as they related to willingness to participate in genetic research.
Ethnic groups did not differ significantly in stated willingness to participate in genetic research; more than 70% in each group were willing to participate. Among Blacks and Hispanics, mistrust and wariness, and stigma were significantly increased in those unwilling to participate; for Whites, perceived benefit to society and perceived importance for knowledge/education were associated with willingness to participate. For Blacks and Hispanics, youth (aged 18–29 years) and college education reduced, but did not eliminate the association between wariness and mistrust and willingness to participate.
Findings suggest that recruitment efforts aimed at increasing the representation of Blacks should be aware of the barriers among those who are less educated, and involve interactive community collaborations, to fully address the mistrust in this population.
attitudes; Blacks; depression; genomic; recruitment; mental illness
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.
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.
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.
Alzheimer’s disease; Cultural competence; Race or ethnicity; Meta-synthesis
Depression among older adults is a major public health concern leading to increased disability and mortality. Less than 3% of older adults utilize professional mental health services for the treatment of depression, less than any other adult age group. And despite similar rates of depression, African Americans are significantly less likely to seek, engage and be retained in professional mental health services than their white counterparts. Cultural differences in the way depression symptoms are manifested, defined, interpreted and labeled may in part explain some of these racial differences in help-seeking behaviors. Focus group methodology was utilized to identify and explore attitudes and beliefs about depression and mental health treatment utilization among 42 older African Americans who had recently suffered a major depressive episode. Thematic analysis of identified six overarching themes: (a) perceptions of depression, (b) the African American experience, (c) seeking treatment as a last resort, (d) myths about treatment, (e) stigma associated with seeking treatment and (f) culturally appropriate coping strategies. We discuss implications for practice, education and research.
Aging; Depression; Stigma; Treatment
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.
Genetic variation research (GVR) may raise concerns about misuse of information and discrimination. Seemingly contradictory positive views about GVR have also been reported.
To dissect this inconsistency, our objectives were to: (1) explore open-ended views of GVR and (2) quantify views of and willingness to participate in GVR by race.
801 African-American and white prior participants in a case-control genetic epidemiology study of colon cancer risks (NCCCS).
Qualitative measures evaluated responses to questions about good and bad things about GVR. Quantitative measures evaluated positive and negative perceptions, perceptions of discrimination, and likelihood of future participation by race.
Open-ended queries about GVR resulted in few “negative” responses. In closed-ended questions, however, African Americans were more likely to feel that such research would: result in higher insurance (41% vs. 30%, p = 0.008), not benefit minorities (29% vs. 14%, p=<0.001), reinforce racism (32% vs. 20%, p = 0.002), and use minorities as guinea pigs (27% vs. 6%, p < 0.001). Overall, after adjustment for potential confounding factors, African-American race remained inversely associated with feeling “very positive” about GVR (46% vs. 57%, p = 0.035). In contrast, African Americans were as likely as whites to express willingness to participate in future GVR studies (46%).
Open-ended questions about GVR were unlikely to spontaneously generate “negative” responses. In contrast, when presented specific examples of potentially negative implications, more respondents agreed, and minorities were more likely to express concerns. This suggests that while participants appear generally positive about GVR, their inability to articulate views regarding these complex concepts may require that researchers engage lay audiences, ensure accurate understanding, and provide them with language to express concerns.
genetic variation research; discrimination; response evaluation
Under-representation of minority populations, particularly African Americans, in HIV/AIDS research is problematic because African Americans bear a greater disease burden from HIV/AIDS. Studies of motivations for participating in research have emphasized factors affecting individuals’ willingness to participate and barriers to participation, especially in regard to HIV vaccine research. Little is known about how underserved minority drug users perceive research and their decisions to participate. This study describes African American drug users’ perceptions of research participation and their decisions to participate based on three kinds of hypothetical HIV/AIDS-related clinical studies. In-depth, qualitative interviews were conducted with 37 underserved, African American crack cocaine users, recruited from participants already enrolled in three different behavioral HIV prevention studies. Interviews were recorded, transcribed, coded for themes and sub-themes and analyzed using directed and conventional content analysis. Participants’ decisions to take part in research often involved multiple motivations for participating. In addition, decisions to participate were characterized by four themes: a desire for information; skepticism and mistrust of research and researchers; perceptions of medical care and monitoring within a study; and participant control in decisions to participate or decline participation. Lack of adequate information and/or medical care and monitoring within a study were related to mistrust, while the provision of information was viewed by some individuals as a right and acknowledgement of the participant’s contribution to the study. Participants perceived, rightly or wrongly, that medical monitoring would control some of the risks of a study. Participants also described situations of exerting control over decisions to enter or withdraw from a research study. Preliminary findings suggest that continuous communication and provision of information may enhance enrollment and adherence. Further exploration of decisions to participate in research will add to the understanding of this complex phenomenon and enhance the ability of individuals with HIV/AIDS to benefit from research.
research participation; economically-disadvantaged African Americans/underserved minorities; drug users; decision making; HIV/AIDS; research ethics
Among women, African Americans are at the highest risk for contracting the human immunodeficiency virus (HIV). Unfortunately, the majority of African-American women do not perceive themselves to be at risk nor perceive the need to engage in safe-sex practices. Given the alarming rate of increase of HIV disease among African-American women, more in-depth information about the sociocultural factors influencing these nonhealth-promoting beliefs and behaviors is needed immediately in order to design effective Information, Education, Communication campaigns. As part of such an effort, a premarketing study of the recently developed female condom, Reality (Wisconsin Pharmacal, Jackson, Wisconsin), was used as an opportunity to assess not only acceptance and relevance of the product, but also knowledge, attitudes, and practices among a group of African-American women in New Orleans. The methodology chosen was focus group discussions. The main finding from these discussions is that the previously reported low-risk perception of HIV disease among African-American females is also true among this group. The discussions suggest that cultural norm of female submission and passivity in sexual negotiation is a major barrier to preventive actions among these African-American women, ie, insistence on condom use during sexual intercourse [corrected]. The second important finding from these focus group discussions is that the women enthusiastically endorsed the female condom because they felt this condom allowed them control over safe-sex practices without having to challenge the power of their male partners. This study also demonstrates that the dynamics of universality and interpersonal learning inherent to insight-oriented or support groups can also be present.(ABSTRACT TRUNCATED AT 250 WORDS)
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.
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.
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).
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.
Cultural beliefs and values are thought to account for differences between African Americans and Whites in the use of advance directives and beliefs about hospice care. However, little data clarifies which beliefs and values explain these differences.
We surveyed 205 older adults (≥ age 65) who received primary care in the Duke University Health System. The survey included five scales: Hospice Beliefs and Attitudes, Preferences for Care, Spirituality, Healthcare System Distrust, and Beliefs about Dying and Advance Care Planning. Compared to Whites, African Americans were less likely to have completed an advance directive (35.5% vs. 67.4%, P<.001) and had less favorable beliefs about hospice care (Hospice Beliefs and Attitudes Scale score, P<.001). African Americans were more likely to express discomfort discussing death, want aggressive care at the end of life, have spiritual beliefs which conflict with the goals of palliative care, and distrust the healthcare system. In multivariate analyses, none of these factors alone completely explained racial differences in either possession of an advance directive or beliefs about hospice care. However, when all of these factors were combined, race was no longer a significant predictor of either of the two outcomes.
Our findings suggest that ethnicity is a marker of common cultural beliefs and values which in combination influence decision-making at the end of life. This study has implications for the design of healthcare delivery models and programs which provide culturally-sensitive end-of-life care to a growing population of ethnically diverse older adults.
race; end-of-life care; hospice; advance directives
The current study sought to determine knowledge about HPV, HPV vaccination and their relationship to cancer; assess acceptability of and intent to vaccinate; and describe the individual characteristics, cultural attitudes, social and environmental factors that affect African American parents' intent to vaccinate.
Two hundred African Americans completed self-administered surveys that assessed factors that may influence HPV vaccination behavior: HPV, cervical cancer, Pap and HPV vaccination knowledge; HPV and cervical cancer risk perception; cultural attitudes and beliefs, such as medical mistrust, spirituality/religiosity, and attitudes about adolescent sexuality and sexual risk behaviors. Eligibility criteria included men and women who: self-identified as African American and had a daughter nine to 17 years of age who had not been told that she had an HPV infection.
Among these African American parents, approximately two-thirds were aware of HPV and HPV vaccination. These individuals were likely to be female, younger, employed, to have social resources, and to have contact with family or friends previously diagnosed with cervical cancer. They were also knowledgeable about HPV, but knowledge did not necessarily lead to vaccination. Among the subgroup of aware individuals who reported having daughters that were and were not vaccinated, vaccination status was significantly affected by whether a pediatrician had recommended the vaccine (p < 0.001). A greater percentage of parents with vaccinated daughters were worried that their child would one day contract an STI. There were no significant differences between the vaccinated and non-vaccinated groups with respect to demographic characteristics or socio-cultural attitudes.
There is a need for continued HPV promotion and education efforts in the African American community. Discussions with pediatric and family practitioners are key to HPV education and promotion activities.
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.
Examine racial differences in self-reported exposure to hospice information and determine how this exposure impacts beliefs about hospice care.
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).
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).
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.