Ford Marvella E, Siminoff Laura A, Pickelsimer Elisabeth, Mainous Arch G, Smith Daniel W, Diaz Vanessa A, Soderstrom Lea H, Jefferson Melanie S, Tilley Barbara C
College of Medicine, Department of Public Health Sciences, Medical University of South Carolina, Charleston, SC 29425, USA.
Health Soc Work. 2013 Feb;38(1):29-38. doi: 10.1093/hsw/hlt001.
African Americans and Latinos are underrepresented in clinical trials. The purpose of this study was to elicit solutions to participation barriers from African Americans and Latinos. Fifty-seven adults (32 African Americans, 25 Latinos) ages 50 years and older participated. The Institute of Medicine's Unequal Treatment conceptual framework was used. Six racially/ ethnically homogenous focus groups were conducted at five sites in three counties. Themes within groups and cross-cutting themes were identified. The NVIVO program was used for data classification. The data were reviewed for final coding and consensus. Shared solutions included addressing costs, recruiting in community contexts, conducting community and individualized patient education, and sharing patient safety information. Participants were unanimously in favor of clinical trials navigation recruitment interventions. Solutions specific to African Americans included diversifying research teams, recognizing past research abuses, and increasing community trust. Solutions specific to Latinos included providing low-literacy materials, providing Spanish-speaking clinicians and advocates, and clarifying that immigration status would neither be documented nor prevent participation. Solutions from African Americans and Latinos reflect their cultural backgrounds and historical experiences. The results suggest the importance of developing a tailored, barriers-focused navigation intervention to improve participation among diverse racial and ethnic populations.
非裔美国人和拉丁裔在临床试验中的代表性不足。本研究的目的是从非裔美国人和拉丁裔中找出解决参与障碍的办法。57名年龄在50岁及以上的成年人(32名非裔美国人,25名拉丁裔)参与了研究。采用了医学研究所的《不平等待遇》概念框架。在三个县的五个地点进行了六个种族/族裔同质的焦点小组讨论。确定了小组内的主题和贯穿各领域的主题。使用NVIVO程序进行数据分类。对数据进行审查以进行最终编码和达成共识。共同的解决办法包括解决成本问题、在社区环境中招募、开展社区和个性化患者教育以及分享患者安全信息。参与者一致赞成临床试验导航招募干预措施。针对非裔美国人的解决办法包括使研究团队多样化、认识到过去的研究滥用行为以及增强社区信任。针对拉丁裔的解决办法包括提供低识字材料、提供讲西班牙语的临床医生和倡导者,并澄清移民身份不会被记录也不会妨碍参与。非裔美国人和拉丁裔提出的解决办法反映了他们的文化背景和历史经历。结果表明,制定一种针对具体障碍的量身定制的导航干预措施对于提高不同种族和族裔人群的参与度很重要。