Simons-Rudolph A P, Iritani B J, Odongo F S, Rennie S, Gilbertson A, Kwaro D, Luseno W K
Pacific Institute for Research and Evaluation (PIRE), Chapel Hill, USA.
Kenya Medical Research Institute (KEMRI), Kisumu, Kenya.
Child Youth Serv Rev. 2020 Sep;116. doi: 10.1016/j.childyouth.2020.105262. Epub 2020 Jul 18.
The rising incidence of infection among youth in sub-Saharan Africa makes HIV-related research among younger people a top priority. There remains, however, a lack of consistent and unambiguous ethical principles and guidance for researchers wishing to conduct HIV studies with adolescents. The overarching aim of our research was to better understand youths' experiences with HIV studies. The present study explored four questions: (1) What strategies are effective for recruiting youth for HIV studies? (2) What motivates youth to participate in these studies? (3) How do study participants perceive HIV testing within the context of a research study? (4) What do participants understand about the risks of study participation? These data are essential to inform guidelines for the responsible conduct of research with young people. We interviewed 82 adolescents (aged 15-19) in Kenya taking part in a study examining ethical issues pertaining to their involvement in HIV-related research. Pursuant to our research questions, we found that direct study recruitment combined with encouragement from female relatives was the greatest facilitator to study enrolment among young people. Most young participants expressed that they were motivated to join the study in order to (1) learn their HIV status (n = 49) and (2) receive HIV-related education (n = 26), even though both are already free and widely available. Participants largely preferred testing in a place they deemed "private," although both the health clinic and home were regarded by adolescents as locations with greater privacy. Adolescents largely did not accurately perceive risks of the study two months after baseline, although they could remember the benefits with great clarity. This work can inform researchers, policymakers, and ethics review committees on approaches to maximize efficiency in recruitment and data collection, and to enhance understanding of risks and benefits in HIV-related research among adolescents. While further research is needed, these data may be used by others conducting HIV research in this region to improve recruitment strategies and more effectively engage and appeal to young people.
撒哈拉以南非洲地区青少年感染率不断上升，这使得针对年轻人开展与艾滋病病毒相关的研究成为重中之重。然而，对于希望对青少年进行艾滋病病毒研究的科研人员而言，仍然缺乏统一且明确的伦理原则和指导方针。我们研究的总体目标是更好地了解年轻人参与艾滋病病毒研究的经历。本研究探讨了四个问题：（1）招募年轻人参与艾滋病病毒研究的有效策略有哪些？（2）促使年轻人参与这些研究的动机是什么？（3）研究参与者如何看待在研究背景下进行的艾滋病病毒检测？（4）参与者对参与研究的风险了解多少？这些数据对于为负责任地开展针对年轻人的研究制定指导方针至关重要。我们采访了肯尼亚82名年龄在15至19岁之间的青少年，他们参与了一项关于其参与艾滋病病毒相关研究的伦理问题的研究。根据我们的研究问题，我们发现直接的研究招募加上女性亲属的鼓励是促使年轻人参与研究的最大推动因素。大多数年轻参与者表示，他们参与研究的动机是：（1）了解自己的艾滋病病毒感染状况（n = 49），以及（2）接受艾滋病病毒相关教育（n = 26），尽管这两者已经免费且广泛可得。参与者大多倾向于在他们认为“私密”的地方进行检测，不过青少年认为健康诊所和家中的隐私性都较好。尽管青少年在基线后两个月基本无法准确感知研究的风险，但他们能非常清晰地记住研究的益处。这项工作可为研究人员、政策制定者和伦理审查委员会提供信息，帮助他们了解如何提高招募和数据收集的效率，以及增强对青少年艾滋病病毒相关研究中风险和益处的理解。虽然还需要进一步研究，但其他在该地区开展艾滋病病毒研究的人员可以利用这些数据来改进招募策略，更有效地吸引年轻人参与研究。
