让社区参与:对基因服务提供环境中基于社区的参与性研究进行文献综述
Heather A Zierhut1, Pranathi Kandikonda2, Emily M Simon2
1Department of Genetics, Cell Biology, and Development, University of Minnesota, 6-160 Jackson Hall, 321 Church Street Southeast, Minneapolis, MN, 55455, USA. zier0034@umn.edu.
Journal of community genetics
|November 25, 2024
概括
基于社区的参与性研究 (CBPR) 可以改善不同人群的遗传咨询 (GC). 然而,很少有研究完全整合CBPR原则,强调需要更多的研究和更明确的指导方针来增强遗传服务.
科学领域:
- 遗传学 遗传学 是一个
- 公共卫生 公共卫生
- 医疗保健服务研究 医疗服务研究
背景情况:
- 在种族/族裔少数群体中,遗传咨询 (GC) 服务使用率存在差异.
- 基于社区的参与型研究 (CBPR) 提供了一个框架,通过将社区观点纳入医疗保健服务来解决这些差异.
研究的目的:
- 从2006年到2023年,审查GC和遗传学服务中国际CBPR的现状.
- 评估CBPR整合的程度,并确定共同的做法和挑战.
主要方法:
- 在五个数据库中进行了系统的文献搜索,对2006年至2023年间发表的同行评审初级研究研究进行了系统的搜索.
- 研究重点是GC,临床遗传学,遗传检测或遗传服务提供,并利用CBPR方法.
- 用一个综合最佳实践的框架来评估CBPR参与程度.
主要成果:
- 在最初识别的3,824项研究中,16项符合纳入标准,主要是来自美国的定性研究.
- 癌症遗传学和遗传教育是常见的研究领域,重点是亚洲/太平洋岛民社区.
- 社区合作伙伴在招聘和结果分析方面参与最多,但在研究问题开发和产品创造方面参与较少.
- 研究表明,在遵守CBPR原则方面存在显著差异,只有三项符合所有九项标准.
结论:
- 在GC服务中对CBPR的研究有限,这表明需要对这种方法进行更多的探索.
- 缺乏评估CBPR质量的标准指南使研究评估复杂化.
- CBPR具有显著的潜力,可以改善GC可访问性和服务不足的人群的结果.
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