Cancer Research Scholars Program, The University of Cincinnati Cancer Center, Cincinnati, OH 45267, USA.
Cincinnati Children's Hospital Medical Center, Department of Pediatrics, College of Medicine, University of Cincinnati, Cincinnati, OH 45229, USA.
Int J Environ Res Public Health. 2024 Oct 19;21(10):1387. doi: 10.3390/ijerph21101387.
South Asians living in the United States are frequently underrepresented in health research. Their lack of participation limits the generalizability of research to them and keeps them from receiving the high-quality care and innovation that some studies may offer. "Research Ready" is a five-panel, community co-created graphic-style story that encourages discussion around the purpose of research, safety/protection while participating, and why diverse participation-including South Asians-improves study results and leads to more effective interventions/treatments. This study leveraged trained young adult "cultural insiders" to invite attendees of a Midwestern South Asian Cultural Festival to read the story aloud together as the characters in English or Hindi and used a decision guide to invite discussion. Post-discussion surveys ( = 104) were analyzed using descriptive statistics. Participants spanned from 10 to 79 years, with 42% < 18 years and more females (61%). Only 18.3% indicated having prior research participation. Adults 40+ years (60%) requested the story/discussion in Hindi, compared to 2.3% of adolescents and 6.7% of younger adults. After the discussion, participants indicated their willingness to consider participation, with most being open to participating in surveys/interviews (95.2%); only 52.9% would consider studies requiring the taking of medicines. Adolescents, females, and adults with higher education were more willing to participate in medication studies. Nearly all (97.1%) said they would feel safe participating in research, and 88.5% shared that the discussion would help them better decide about future participation. In conclusion, "Research Ready" discussions shared by cultural insiders effectively encourage South Asians to consider future research participation.
生活在美国的南亚人在健康研究中经常代表性不足。他们参与度低,限制了研究结果的普遍性,使他们无法获得某些研究可能提供的高质量护理和创新。“研究就绪”是一个由五个板块组成的、由社区共同创作的图形故事,旨在鼓励人们讨论研究的目的、参与研究的安全性/保护措施,以及为什么包括南亚人在内的多样化参与可以改善研究结果,并促进更有效的干预措施/治疗方法。本研究利用受过培训的年轻成年“文化内部人士”邀请中西部南亚文化节的与会者一起大声朗读这个故事,角色可以用英语或印地语扮演,并使用决策指南邀请大家讨论。对讨论后的调查问卷(n=104)进行了描述性统计分析。参与者的年龄从 10 岁到 79 岁不等,其中 42%<18 岁,女性占比 61%。只有 18.3%的人表示之前有过研究参与经历。40 岁以上的成年人(60%)要求用印地语讲述这个故事/进行讨论,而青少年和年轻成年人的这一比例分别为 2.3%和 6.7%。讨论结束后,参与者表示愿意考虑参与研究,大多数人愿意参与调查/访谈(95.2%);只有 52.9%的人愿意参与需要服用药物的研究。青少年、女性和受过高等教育的成年人更愿意参与药物研究。几乎所有人(97.1%)表示他们在参与研究时会感到安全,88.5%的人表示讨论将帮助他们更好地决定未来是否参与。总之,文化内部人士分享的“研究就绪”讨论有效地鼓励南亚人考虑未来参与研究。