Engagement of vulnerable communities in HIV prevention research in India: a qualitative investigation
Abstract Background 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 b...
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| Format: | Article |
| Language: | English |
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BMC
2024-01-01
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| Series: | Research Involvement and Engagement |
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| Online Access: | https://doi.org/10.1186/s40900-024-00542-w |
| _version_ | 1797276177698652160 |
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| author | Venkatesan Chakrapani Vijayalakshmi Loganathan Paromita Saha Devi Leena Bose Nabeela Khan Tiara Aurora Jyoti Narayan Joyeeta Mukherjee Saif ul Hadi Chitrangna Dewan |
| author_facet | Venkatesan Chakrapani Vijayalakshmi Loganathan Paromita Saha Devi Leena Bose Nabeela Khan Tiara Aurora Jyoti Narayan Joyeeta Mukherjee Saif ul Hadi Chitrangna Dewan |
| author_sort | Venkatesan Chakrapani |
| collection | DOAJ |
| description | Abstract Background 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. Methods 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). Results 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. Conclusions 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. |
| first_indexed | 2024-03-07T15:24:37Z |
| format | Article |
| id | doaj.art-33764184d6e94b0998bcafcbd9500a04 |
| institution | Directory Open Access Journal |
| issn | 2056-7529 |
| language | English |
| last_indexed | 2024-03-07T15:24:37Z |
| publishDate | 2024-01-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj.art-33764184d6e94b0998bcafcbd9500a042024-03-05T17:08:48ZengBMCResearch Involvement and Engagement2056-75292024-01-0110111310.1186/s40900-024-00542-wEngagement of vulnerable communities in HIV prevention research in India: a qualitative investigationVenkatesan Chakrapani0Vijayalakshmi Loganathan1Paromita Saha2Devi Leena Bose3Nabeela Khan4Tiara Aurora5Jyoti Narayan6Joyeeta Mukherjee7Saif ul Hadi8Chitrangna Dewan9Centre for Sexuality and Health Research and Policy (C-SHaRP)Centre for Sexuality and Health Research and Policy (C-SHaRP)IAVIIAVIIAVIQuicksand Design StudioQuicksand Design StudioIAVIIAVIQuicksand Design StudioAbstract Background 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. Methods 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). Results 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. Conclusions 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.https://doi.org/10.1186/s40900-024-00542-wCommunity engagementHIV prevention researchQualitative researchIndiaCommunity-academic partnerships |
| spellingShingle | Venkatesan Chakrapani Vijayalakshmi Loganathan Paromita Saha Devi Leena Bose Nabeela Khan Tiara Aurora Jyoti Narayan Joyeeta Mukherjee Saif ul Hadi Chitrangna Dewan Engagement of vulnerable communities in HIV prevention research in India: a qualitative investigation Research Involvement and Engagement Community engagement HIV prevention research Qualitative research India Community-academic partnerships |
| title | Engagement of vulnerable communities in HIV prevention research in India: a qualitative investigation |
| title_full | Engagement of vulnerable communities in HIV prevention research in India: a qualitative investigation |
| title_fullStr | Engagement of vulnerable communities in HIV prevention research in India: a qualitative investigation |
| title_full_unstemmed | Engagement of vulnerable communities in HIV prevention research in India: a qualitative investigation |
| title_short | Engagement of vulnerable communities in HIV prevention research in India: a qualitative investigation |
| title_sort | engagement of vulnerable communities in hiv prevention research in india a qualitative investigation |
| topic | Community engagement HIV prevention research Qualitative research India Community-academic partnerships |
| url | https://doi.org/10.1186/s40900-024-00542-w |
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