Meaningful community engagement (CE) in HIV prevention research is crucial for successful and ethically robust study implementation. We conducted a qualitative study to understand the current CE practices in HIV prevention research and to identify expressed and implicit reasons behind translational gaps highlighted by communities and researchers. For this exploratory qualitative study, we recruited a purposive sample of participants from Indian government-recognised key populations such as men who have sex with men, transgender women, people who inject drugs and female sex workers; general population adults and adolescents/youth; and researchers. We conducted 13 virtual focus groups (n = 86) between July and October 2021. Data were explored from a critical realist perspective and framing analysis (i.e., examining how the participants framed the narratives). Participants reported that study communities, especially those from key populations, were primarily involved in data collection, but not necessarily with optimal training. Involvement of communities before the start of the study (e.g., obtaining feedback on the study’s purpose/design) or once the study is completed (e.g., sharing of findings) were highlighted as priorities for meaningful engagement. Participants suggested meaningful CE in all stages of the study: (1) before the study—to get inputs in finalising the study design, drafting comprehensible informed consent forms and culturally-appropriate data collection tools, and deciding on appropriate monetary compensation; (2) during the study—adequate training of community field research staff; and (3) after the study—sharing the draft findings to get community inputs, and involving communities in advocacy activities towards converting evidence into action, policy or programs. Timely and transparent communications with communities were explicitly stated as critical for gaining and maintaining trust. Mutual respect, reciprocity (e.g., appropriate monetary compensation) and robust community feedback mechanisms were considered critical for meaningful CE. The findings highlighted the translational gaps and priority areas for capacity building to strengthen CE in HIV prevention research. It is not only important to engage communities at various stages of research but to understand that trust, dignity, respect, and reciprocity are fundamentally preferred ways of meaningful community engagement. Engaging communities in HIV prevention research enhances the rigour and impact of research. We sought to understand the current community engagement practices and to identify how communities preferred to get involved in research. We explored these topics with key and general populations and researchers, by conducting 13 focus group discussions with 86 participants. We found that there was limited involvement of communities before the start of the study and after its completion, although trained community members were involved in data collection. Participants strongly suggested that the community should be involved throughout—before initiation, during the study and after study completion. Participants’ preferred ways of engaging communities reflected that mutual respect, reciprocity and transparent communications are critical for meaningful and successful community engagement.

中文翻译：

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印度弱势群体参与艾滋病毒预防研究：定性调查

HIV 预防研究中有意义的社区参与 (CE) 对于成功且符合道德规范的研究实施至关重要。我们进行了一项定性研究，以了解当前艾滋病毒预防研究中的 CE 实践，并确定社区和研究人员强调的转化差距背后的明示和隐含原因。在这项探索性定性研究中，我们有目的地从印度政府认可的关键人群中招募了参与者样本，例如男男性行为者、变性女性、注射吸毒者和女性性工作者；一般人群成人和青少年/青年；和研究人员。2021 年 7 月至 10 月期间，我们进行了 13 个虚拟焦点小组（n = 86）。从批判现实主义角度和框架分析（即检查参与者如何构建叙述）探索数据。参与者报告说，研究社区，特别是来自关键人群的研究社区，主要参与数据收集，但不一定接受最佳培训。在研究开始之前（例如，获得有关研究目的/设计的反馈）或研究完成后（例如，分享研究结果）的社区参与被强调为有意义参与的优先事项。参与者建议在研究的各个阶段进行有意义的CE：（1）在研究之前——在最终确定研究设计、起草可理解的知情同意书和适合文化的数据收集工具以及决定适当的货币补偿方面获得投入；(2) 研究期间——对社区实地研究人员进行充分的培训；(3) 研究结束后——分享研究结果草案以获取社区意见，并让社区参与宣传活动，将证据转化为行动、政策或计划。与社区的及时、透明的沟通被明确表示对于获得和维持信任至关重要。相互尊重、互惠（例如，适当的金钱补偿）和强大的社区反馈机制被认为对于有意义的CE至关重要。研究结果强调了加强艾滋病毒预防研究中的CE能力建设的转化差距和优先领域。让社区参与各个研究阶段不仅很重要，而且要了解信任、尊严、尊重和互惠是有意义的社区参与的根本首选方式。让社区参与艾滋病毒预防研究可以增强研究的严谨性和影响力。我们试图了解当前的社区参与实践，并确定社区倾向于如何参与研究。我们通过与 86 名参与者进行 13 次焦点小组讨论，与关键人群和一般人群以及研究人员探讨了这些主题。我们发现，尽管经过培训的社区成员参与了数据收集，但在研究开始之前和研究完成之后，社区的参与有限。参与者强烈建议社区应全程参与——开始前、研究期间和研究完成后。参与者首选的社区参与方式反映出，相互尊重、互惠和透明的沟通对于有意义和成功的社区参与至关重要。