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Diversity in Clinical and Biomedical Research: A Promise Yet to Be Fulfilled.临床与生物医学研究中的多样性:尚未实现的承诺。
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Establishing survey validity and reliability for American Indians through "think aloud" and test-retest methods.通过“出声思考”和重测法建立针对美国印第安人的调查效度和信度。
Qual Health Res. 2015 Jun;25(6):820-30. doi: 10.1177/1049732315582010. Epub 2015 Apr 17.
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The Symbolic Value and Limitations of Racial Concordance in Minority Research Engagement.少数群体研究参与中种族一致性的象征价值与局限性
Qual Health Res. 2016 May;26(6):830-41. doi: 10.1177/1049732315575708. Epub 2015 Mar 13.
5
Latino beliefs about biomedical research participation: a qualitative study on the U.S.-Mexico border.拉丁裔对参与生物医学研究的看法:一项关于美墨边境的定性研究。
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African American women's perceptions and attitudes regarding participation in medical research: the Mayo Clinic/The Links, Incorporated partnership.非裔美国女性对参与医学研究的看法和态度:梅奥诊所与“林克斯”公司的合作项目
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A qualitative study of recruitment barriers, motivators, and community-based strategies for increasing clinical trials participation among rural and urban populations.一项关于招募障碍、动机以及增加农村和城市人口参与临床试验的社区策略的定性研究。
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开发一种具有文化敏感性的调查工具,以评估美国-墨西哥边境地区拉丁裔人群参与生物医学研究的情况。

Developing a Culturally Informed Survey Instrument to Assess Biomedical Research Participation Among Latinos on the U.S.-Mexico Border.

机构信息

1 Fred Hutchinson Cancer Research Center, Seattle, Washington, USA.

2 University of Washington, Seattle, Washington, USA.

出版信息

Qual Health Res. 2019 Feb;29(3):445-454. doi: 10.1177/1049732318801364. Epub 2018 Oct 10.

DOI:10.1177/1049732318801364
PMID:30304993
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6667166/
Abstract

Racial/ethnic minorities, rural populations, and those with low socioeconomic status income are underrepresented in research in the United States (U.S.). Assessing preferences for recruitment, participation, and the role of beliefs about biomedical research in specific and unique underserved communities represents a potentially critical step in reducing barriers to biomedical research participation. We developed a culturally informed survey to measure factors related to participation, knowledge, expectations, and barriers to biomedical research participation among Latinos living in a U.S. border community. We employed a multidisciplinary team approach to a sequential, three-phase qualitative study that included interviews ( n = 35), focus groups ( n =24), and "think-aloud" cognitive interviews ( n = 5). Our study demonstrates the value of applying multiple qualitative approaches to inform a culturally relevant quantitative survey incorporating words and constructs relevant to the population of interest. The study contributes to qualitative method research paradigms by developing a research protocol that integrates the expertise and perspectives of researchers and community members from multiple disciplines and institutions.

摘要

美国的少数民族、农村人口和社会经济地位较低的人群在研究中代表性不足。评估在特定和独特的服务不足社区中对招募、参与以及对生物医学研究的信念的偏好,代表了减少参与生物医学研究障碍的一个潜在关键步骤。我们开发了一种文化上有见识的调查,以衡量生活在美国边境社区的拉丁裔人群参与、知识、期望和生物医学研究参与障碍相关的因素。我们采用多学科团队方法进行了一项顺序的、三阶段的定性研究,包括访谈(n=35)、焦点小组(n=24)和“出声思考”认知访谈(n=5)。我们的研究表明,应用多种定性方法为包含相关人群的文字和结构的文化相关定量调查提供信息的价值。该研究通过制定研究方案为定性方法研究范式做出了贡献,该方案整合了来自多个学科和机构的研究人员和社区成员的专业知识和观点。