Herring Patti, Montgomery Susanne, Yancey Antronette K, Williams David, Fraser Gary
Department of Health Promotion and Education, Loma Linda University School of Public Health, Loma Linda, California, USA.
Ethn Dis. 2004 Summer;14(3):423-30.
This paper presents findings from formative research exploring Black Seventh-day Adventist church members' attitudes about Black non-participation in past studies, and suggestions for recruiting 45,000 Blacks to an upcoming longitudinal cohort study. Data were collected in California and Pennsylvania, using 15 key informant interviews and 6 focus groups. Key findings supported and elucidated existing literature on the barriers to minority recruitment, and included: a general mistrust of the medical/scientific community; a perception that providing informed consent relinquishes, rather than protects, an individual's rights; a perception of being "studied" rather than "studying," due to the paucity of Black investigators; and a perceived lack of cultural sensitivity in the recruitment of Blacks, and in the conduct of the research itself. Building trust throughout the process, from clearly demonstrating the benefits of participation, at the individual and community level, to including Blacks in the study design from conceptualization to data analysis and presentation, emerged as a critical component in garnering Black participation in future studies.
本文介绍了一项形成性研究的结果，该研究探讨了基督复临安息日会黑人教会成员对黑人过去不参与研究的态度，以及为即将开展的一项针对45000名黑人的纵向队列研究招募参与者的建议。研究数据在加利福尼亚州和宾夕法尼亚州收集，采用了15次关键 informant 访谈和6次焦点小组讨论。主要研究结果支持并阐明了现有文献中关于少数群体招募障碍的内容，包括：对医学/科学界普遍不信任；认为提供知情同意书会放弃而非保护个人权利；由于黑人研究人员匮乏，感觉自己是被“研究”而非“参与研究”；以及在招募黑人以及开展研究过程中，认为缺乏文化敏感性。在整个过程中建立信任，从在个人和社区层面清楚展示参与的益处，到从概念化到数据分析和呈现都让黑人参与到研究设计中，这成为吸引黑人参与未来研究的关键因素。
