公共卫生 公共卫生
Van Ta Park1,2, Janice Y Tsoh1,3, Bora Nam2
1Asian American Research Center on Health (ARCH), University of California San Francisco, San Francisco, CA, USA.
参与CARE注册的参与者对亚裔美国人,夏威夷原住民和太平洋岛民 (AANHPI) 在研究中的代表性有所贡献. 改善沟通和展示影响力是保持参与者在衰老和痴呆研究中的关键.
科学领域:
- 老年学和人口健康学
- 临床研究和数据管理
- 健康差距和少数群体健康状况
背景情况:
- AANHPI研究和教育协作方法 (CARE) 注册表解决了亚裔美国人,夏威夷原住民和太平洋岛民 (AANHPI) 在衰老,阿尔茨海默病和相关痴呆症 (ADRD) 和护理研究中的代表性不足.
- 该登记册包括10,485名AANHPI成年人,突出了参与这些社区的重大努力.
研究的目的:
- 通过了解参与者的经验,为CARE注册表制定保留策略.
- 确定动机和障碍,以继续参与长期研究在AANHPI成年人.
主要方法:
- 通过Zoom与至少一年注册的CARE参与者进行了13个半结构化焦点小组 (N=71).
- 使用斯坦福闪电报告方法 (Plus,Delta,Insight) 进行快速定性分析,以抽象发现.
- 焦点小组包括不同的AANHPI族裔,其中大多数是女性,并且有很大比例是家庭护理人员.
主要成果:
- 参与者表达了强烈的保留动机,源于渴望为AANHPI的代表性做出贡献,并"回"他们的社区.
- 改进的关键领域包括为参与者提供对其研究影响的更深入理解,并提供更多参与机会.
- 潜在的数据隐私问题,特别是在数据商业化方面,被确定为参与者停止使用的风险.
- 关于加强沟通的建议包括多样化的模式偏好和通过社交媒体和YouTube促进参与者的见证.
结论:
- 快速的定性分析为增强CARE注册保留策略提供了可操作的见解.
- 未来的保留通讯应该强调AANHPI在研究中的代表的重要性和社区贡献的价值.
- 计划在2025年春季以AANHPI语言开展的重点小组旨在进一步完善参与和保留努力.
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