Issues Affecting Minority Participation in Research Studies of Alzheimer Disease

Welsh, Kathleen A.; Ballard, Edna L.; Nash, Florence; Raiford, Kate; Harrell, Lindy E.

doi:10.1097/00002093-199400000-00005

Cited by 41 publications

(12 citation statements)

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“…Mason stated that the terminology of many consent documents may be too technical for many laypeople to understand, which could further increase a potential participant's sense of intimidation and contribute to cultural distrust. With respect to age of participants, Welsh, Ballard, Nash, Raiford, and Harrell (1994) suggested that illiteracy could also be a barrier to participation when conducting research with older African Americans.…”

Section: Lack Of Understanding Regarding the Research Processmentioning

confidence: 99%

“…This is only something that we can speculate about; however, generally speaking, unless otherwise specified, most African Americans will assume that the researchers are White because it matches their perceptions or experiences about the nature of data collection efforts. Researchers (Gibson & Abram, 2003;Smith et al, 2007;Tillman, 2006;Welsh et al, 1994) have noted the importance of recruiting more African American researchers into the field to provide African American participants with the visible comfort of having members of the research team who are ra-cially similar. However, other research (e.g., Thompson et al, 1996) suggests that race or ethnicity of the researchers has no impact on African American research participation, as long as participants are treated with dignity and respect (Huang & Coker, in press;Kerkorian et al, 2007).…”

Section: Issues Challenges and Mistakes Made In Participant Recruitmentioning

confidence: 99%

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Research With African Americans: Lessons Learned About Recruiting African American Women

Coker

Huang

Kashubeck‐West

2009

J Multicult Couns & Deve

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the authors briefly explore literature related to recruiting african american research participants, reflect on their experiences conducting body image research with a sample of african american college women in an earlier study (s. Kashubeck-West et al., 2008), and discuss some methodological and cultural challenges that they encountered during data collection for the study.los autores exploran brevemente la literatura relacionada con el reclutamiento de individuos afroamericanos para participar en estudios de investigación, reflexionan sobre sus experiencias al llevar a cabo estudios sobre imagen corporal con una muestra de mujeres afroamericanas universitarias en un estudio anterior (s. Kashubeck-West et al., 2008) y por último discuten algunos de los desafíos metodológicos y culturales con los que tuvieron que enfrentarse durante la recopilación de datos para el estudio.

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Section: Lack Of Understanding Regarding the Research Processmentioning

confidence: 99%

Section: Issues Challenges and Mistakes Made In Participant Recruitmentioning

confidence: 99%

Research With African Americans: Lessons Learned About Recruiting African American Women

Coker

Huang

Kashubeck‐West

2009

J Multicult Couns & Deve

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“…Such strategies include: raising awareness through outreach programs, local churches and community organizations; publicity campaigns targeted to African Americans; increasing awareness about studies among doctors; using community-centered communication involving trusted individuals, and involvement and commitment of culturally-sensitive staff (Freedman, 1998;Swanson and Ward, 1995;Welsh et al, 1994;Shavers-Hornaday et al, 1997;Harris et al, 1996;El-Sadr & Capps, 1992). Other strategies include use of incentives like financial compensation, therapeutic interventions, provision of health care, access to needed services, and provision of transportation services to facilitate participation (El-Sadr & Capps, 1992;Welsh et al, 1994;Shavers-Hornaday et al, 1997;Swanson and Ward, 1995). Patients who have no previous conception of a clinical trial need ''an extensive educational effort'' about trials, sampling, responsibilities of researcher and participant, and other issues in order to understand and participate in clinical trials (El-Sadr & Capps, 1992).…”

Section: Introductionmentioning

confidence: 99%

African Americans’ views on research and the Tuskegee Syphilis study

Freimuth

Quinn

Thomas

et al. 2001

Social Science & Medicine

528

373

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The participation of African Americans in clinical and public health research is essential. However, for a multitude of reasons, participation is low in many research studies. This article reviews the literature that substantiates barriers to participation and the legacy of past abuses of human subjects through research. The article then reports the results of seven focus groups with 60 African Americans in Los Angeles, Chicago, Washington, DC, and Atlanta during the winter of 1997. In order to improve recruitment and retention in research, the focus group study examined knowledge of and attitudes toward medical research, knowledge of the Tuskegee Syphilis Study, and reactions to the Home Box Office production, Miss Evers' Boys, a fictionalized version of the Tuskegee Study, that premiered in February, 1997. The study found that accurate knowledge about research was limited; lack of understanding and trust of informed consent procedures was problematic; and distrust of researchers posed a substantial barrier to recruitment. Additionally, the study found that, in general, participants believed that research was important, but they clearly distinguished between types of research they would be willing to consider participating in and their motivations for doing so.

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“…These barriers may affect early diagnosis, treatment, and management. [25][26][27] It is unclear whether these factors affect neuropsychiatric and neurobehavioral symptoms in Hispanics with AD and how they differ from those experienced by nonHispanic white patients with AD. [28][29][30] Data on neuropsychiatric and behavioral symptoms associated with dementia suggest that Hispanic populations experience higher levels of symptoms.…”

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confidence: 99%

Neuropsychiatric and Behavioral Symptoms in a Community Sample of Hispanics With Alzheimer's Disease

Ortiz

Fitten²,

Cummings³

et al. 2006

Am J Alzheimers Dis Other Demen

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The purpose of this study was to characterize and compare neuropsychiatric symptoms in a sample of 367 community-dwelling subjects: 70 Hispanics and 230 non-Hispanic white patients with Alzheimer's disease, and 22 Hispanics and 45 non-Hispanic white healthy age-matched controls. Neuropsychiatric symptoms were common among all patients with Alzheimer's disease. In the Alzheimer's disease groups, Hispanic subjects presented to the initial assessment with more symptoms than non-Hispanic white subjects did. In comparison to the non-Hispanic white population, the proportion of Hispanics with neuropsychiatric and behavioral symptoms was higher. These findings have implications for differential sociocultural presentations of Alzheimer's disease among ethnic/racial groups.

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Issues Affecting Minority Participation in Research Studies of Alzheimer Disease

Cited by 41 publications

References 0 publications

Research With African Americans: Lessons Learned About Recruiting African American Women

Research With African Americans: Lessons Learned About Recruiting African American Women

African Americans’ views on research and the Tuskegee Syphilis study

Neuropsychiatric and Behavioral Symptoms in a Community Sample of Hispanics With Alzheimer's Disease

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