Nguyen Annie L, Brown Brandon, Taylor Jeff, Estevez Marlene, Loftus Rick
Department of Family Medicine, Keck School of Medicine of the University of Southern California, Los Angeles, CA Center for Healthy Communities, Department of Social Medicine and Population Health, University of California, Riverside School of Medicine, Riverside, CA HIV and Aging Research Project, Palm Springs Division of Infectious Diseases and Health Policy Research Institute, University of California, Irvine School of Medicine, Irvine, CA Eisenhower Medical Center, Rancho Mirage, CA Department of Medicine, Keck School of Medicine of the University of Southern California, Los Angeles, CA.
Medicine (Baltimore). 2017 Dec;96(48):e8495. doi: 10.1097/MD.0000000000008495.
Approximately half of all people living with HIV in the US are age 50 and older. Existing research highlights the health challenges of these individuals, but little work has focused on gathering input about concerns in participating in HIV and aging research. Prior to designing a prospective cohort study on HIV and aging, we elicited feedback from potential participants on general attitudes toward participation in a prospective HIV cohort study, and perspectives on important research topics relevant to older adults living with HIV.Three qualitative focus groups were formed.Three focus groups (5-7 participants each; N = 18) were held with older adults living with HIV. All discussions were audiorecorded and transcribed. Transcripts were analyzed using content analysis.Participants emphasized the importance of data confidentiality, shared concerns about study biases arising from sponsored research, and suggested that conflicts of interest should be independently assessed by "representative" boards made of community members. They urged researchers to be mindful of research "burnout," because many people with HIV participate in multiple research studies. A number of priority research areas emerged, including the gap in provision of end-of-life services.Many older adults with HIV are knowledgeable about the research process and offer valuable insights to researchers. Addressing participant concerns can facilitate inclusion and enhance HIV research success.
在美国，约一半的艾滋病毒感染者年龄在50岁及以上。现有研究突出了这些人的健康挑战，但很少有工作聚焦于收集他们对参与艾滋病毒与老龄化研究相关担忧的意见。在设计一项关于艾滋病毒与老龄化的前瞻性队列研究之前，我们就参与前瞻性艾滋病毒队列研究的总体态度以及与感染艾滋病毒的老年人相关的重要研究课题的观点，征求了潜在参与者的反馈意见。我们组建了三个定性焦点小组。针对感染艾滋病毒的老年人举行了三个焦点小组讨论（每个小组5 - 7名参与者；N = 18）。所有讨论都进行了录音和转录。使用内容分析法对转录文本进行了分析。参与者强调了数据保密的重要性，对赞助研究产生的研究偏差表达了共同担忧，并建议利益冲突应由由社区成员组成的“代表性”委员会进行独立评估。他们敦促研究人员留意研究“倦怠”问题，因为许多艾滋病毒感染者参与了多项研究。出现了一些优先研究领域，包括临终服务提供方面的差距。许多感染艾滋病毒的老年人了解研究过程，并能为研究人员提供宝贵见解。解决参与者的担忧有助于提高参与率并增强艾滋病毒研究的成功率。
