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非裔美国女性对参与临床研究的看法。

Perceptions of clinical research participation among African American women.

作者信息

Smith Yolanda R, Johnson Angela M, Newman Lisa A, Greene Ardeth, Johnson Timothy R B, Rogers Juliet L

机构信息

Department of Obstetrics and Gynecology, University of Michigan, Ann Arbor, Michigan 49109, USA.

出版信息

J Womens Health (Larchmt). 2007 Apr;16(3):423-8. doi: 10.1089/jwh.2006.0124.

DOI:10.1089/jwh.2006.0124
PMID:17439387
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC1994515/
Abstract

BACKGROUND

Recruiting minority women into clinical research remains a significant challenge to conducting ethnically representative research. The main objective of this Office on Women's Health, DHHS-funded e-health database evaluation project was to examine African American women 's thoughts and perceptions about the clinical research process and about participation in the University of Michigan Women's Health Registry research database.

METHODS

Thirty-one African American women were recruited from the community to participate in a total of five 90-minute focus group discussions. All sessions were audiotaped and transcribed verbatim. Thematic content analysis was used to identify relevant themes about participation in clinical research and the Women's Health Registry.

RESULTS

Ten common trends were identified. (1) Information about the Women's Health Registry is not reaching the community. (2) Research is perceived as biased to benefit Caucasians. (3) Community involvement by the research team is critical for trust to develop. (4) Research directly relevant to African Americans or their community will encourage participation. (5) Researchers should use existing networks and advertise in appropriate locations. (6) The community needs more information concerning research. (7) Compensation is important. (8) Research that addresses a personal or family medical problem encourages involvement. (9) Minority representation on the research team is a motivator to participation. (10) There is limited time for healthcare-related activities.

CONCLUSIONS

Successful recruitment strategies for African American women should feature community-based, culturally appropriate approaches. Online research databases for subject recruitment will likely be successful only if implemented within a broader community-oriented program.

摘要

背景

招募少数族裔女性参与临床研究仍然是开展具有种族代表性研究的一项重大挑战。这个由美国卫生与公众服务部妇女健康办公室资助的电子健康数据库评估项目的主要目标是研究非裔美国女性对临床研究过程以及参与密歇根大学妇女健康登记研究数据库的想法和看法。

方法

从社区招募了31名非裔美国女性,她们总共参加了五次为时90分钟的焦点小组讨论。所有会议均进行了录音并逐字转录。采用主题内容分析法来确定有关参与临床研究和妇女健康登记的相关主题。

结果

确定了十个常见趋势。(1)关于妇女健康登记的信息未传达至社区。(2)研究被认为存在有利于白人的偏向。(3)研究团队的社区参与对于建立信任至关重要。(4)与非裔美国人或其社区直接相关的研究将鼓励参与。(5)研究人员应利用现有网络并在合适的地点进行宣传。(6)社区需要更多有关研究的信息。(7)补偿很重要。(8)解决个人或家庭医疗问题的研究鼓励参与。(9)研究团队中有少数族裔代表是参与的一个激励因素。(10)用于医疗保健相关活动的时间有限。

结论

针对非裔美国女性的成功招募策略应采用基于社区、符合文化习惯的方法。只有在更广泛的以社区为导向的项目中实施,用于招募受试者的在线研究数据库才可能成功。

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