Participatory Video-Knowledge Mobilization with Community Health Workers and Academics in HIV Prevention Research in South Africa: "the Road to Masiphumulele"

Background and Purpose: Video is an increasingly important knowledge mobilization (KMb) medium, particularly for community-based HIV and other health research with marginalized populations in resource-constrained settings. Barriers due to lack of access to education, low scientific literacy, HIV stigma, and lack of university/library access to scholarly publications among academics contribute to a chasm between publicly funded global health research/findings and community stakeholders. Existing Video-KMb guidelines focus on technical dimensions, less so ethical and participatory processes of knowledge co-production. We implemented Video-KMb in a large-team HIV prevention research project in South Africa. Objectives were to produce video products, document and evaluate our process and challenges, and identify best practices for Video-KMb.

Methods: From January-December 2017, as part of a 5-year Large Team Grant on social and behavioral challenges of new HIV prevention technologies in South Africa, we implemented a participatory Video-KMb project. The project was a partnership between the University of Toronto, 3 universities and 3 community-based organizations (CBOs) in South Africa. We co-developed open-ended interview guides and engaged community health workers (CHWs) and trainees (6-Male, 8-Female), and academics (3-Male, 4-Female), in video-recorded 30-60-minute interviews in CBOs and community settings in Cape Town and neighboring townships (N=21; 13 people-of-color). Video interviews explored processes and challenges in community stakeholder engagement in biomedical HIV prevention trials in South Africa. We produced five 1.5-6-minute professional-quality videos shared with all partners.

Results: Video-KMb allowed CHWs to speak for themselves (two-minute video screening from Masiphumulele/Desmond Tutu HIV Foundation: https://vimeo.com/210812320). The process entailed prolonged engagement and sensitively navigating initial concerns and hesitations about video-recording from CHWs, academics, and CBOs. Good practices emerged in the following domains: 1) Ethics: we first sought CBO consent, and then individual consent to participate, through a process that ensured CHWs understood the project context, reasons for soliciting their involvement, negotiated mutual terms of engagement, and allowed time (~1 month) to decide to participate or not. 2) Engagement: Rather than using Video-KMb post hoc—to 'translate' research findings—we implemented participatory processes to enable CHW expertise to inform the findings. 3) Data analysis: Working with a professional videographer, CHWs, and academics—analogous to thematic content analysis—we iteratively co-identified themes, assembled, re-assembled, and edited video and audio content. 4) Member checking: All videos were vetted by participating CHWs, academics, and CBOs; statements/images they feared might be misconstrued were deleted/replaced, and the videos shared again for review. 5) Power/decision-making: Final-cut privilege rested with video participants and CBOs. 6) Limitations: Professional-quality video is expensive, time-consuming, and cannot reproduce the complexities of a manuscript; however, visual images convey powerful messages for broad dissemination.

Conclusions and Implications: Video-KMb is a participatory process with a shared product. Values and strategies central to social work—transparency, trust-building, mutuality, shared power and decision-making, and community engagement—mitigated challenges due to historically-based mistrust, HIV stigma, and unequal power/resources. The process of participatory Video-KMb can serve as a mechanism for community empowerment and meaningful community engagement with research. Video-KMb products 'outlive' a research project and extend the bounds of traditional scholarly venues.