Formative research to design a culturally-appropriate cancer clinical trial education program to increase participation of African American and Latino communities

Formative research to design a culturally-appropriate cancer clinical trial education program to increase participation of African American and Latino communities
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DOI:
10.1186/s12889-020-08939-4
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发表时间:
2020-06-03
期刊:
影响因子:
4.5
通讯作者:
Wilkins, Consuelo H.
Wilkins, Consuelo H.
中科院分区:
医学2区
文献类型:
--
作者:
Cunningham-Erves, Jennifer;Barajas, Claudia;Wilkins, Consuelo H.

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背景解决有关癌症临床试验和生物标本捐赠的知识缺陷可能会提高少数种族和民族的参与度。本文介绍了形成性研究过程中,用于设计一个文化适当的癌症临床试验教育计划,为非洲裔美国人和拉丁裔社区。我们的特点是社区成员的反馈和它的集成到program.MethodsWe纳入了三个参与的方法到形成的研究过程中,迭代开发的程序:包括社区为基础的组织(CBO)的领导人作为研究团队成员,进行焦点小组和认知访谈与社区成员作为审查员/顾问,并与两个社区咨询小组互动。一个迭代演绎的方法被用来分析焦点小组数据。咨询小组和社区成员的定性数据进行了汇编和使用,以最终确定program.ResultsFocus组的主题是:1)社区观点的整体介绍; 2)社区意见和问题的内容介绍; 3)文化上的具体问题,参与癌症临床试验; 4)临床试验参与的障碍;和5)社区健康教育工作者的观点。科学专家和社区成员在审查过程中记录了反馈意见,并建议使用外围,证据,语言,社会文化策略和选民参与来确保文化适当性。最后的程序由两个版本组成(英语和西班牙语)的一个文化适当的幻灯片演示文稿与扬声器笔记和视频代表社区成员和研究人员testimonies. Conclusionsembracating多种社区参与的方法到形成性的研究过程中,可以促进多个社区的观点和加强文化的包容性,旨在促进非裔美国人和拉丁美洲人参与癌症临床试验的计划的适当性。
BackgroundAddressing knowledge deficiencies about cancer clinical trials and biospecimen donation can potentially improve participation among racial and ethnic minorities. This paper describes the formative research process used to design a culturally-appropriate cancer clinical trials education program for African American and Latino communities. We characterized community member feedback and its integration into the program.MethodsWe incorporated three engagement approaches into the formative research process to iteratively develop the program: including community-based organization (CBO) leaders as research team members, conducting focus groups and cognitive interviews with community members as reviewers/consultants, and interacting with two community advisory groups. An iterative-deductive approach was used to analyze focus group data. Qualitative data from advisory groups and community members were compiled and used to finalize the program.ResultsFocus group themes were: 1) Community Perspectives on Overall Presentation; 2) Community Opinions and Questions on the Content of the Presentation; 3) Culturally Specific Issues to Participation in Cancer Clinical Trials; 4) Barriers to Clinical Trial Participation; and 5) Perspectives of Community Health Educators. Feedback was documented during reviews by scientific experts and community members with suggestions to ensure cultural appropriateness using peripheral, evidential, linguistic, sociocultural strategies, and constituent-involving. The final program consisted of two versions (English and Spanish) of a culturally-appropriate slide presentation with speaker notes and videos representing community member and researcher testimonials.ConclusionsIncorporating multiple community engagement approaches into formative research processes can facilitate the inclusion of multiple community perspectives and enhance the cultural-appropriateness of the programs designed to promote cancer clinical trial participation among African Americans and Latinos.