On 25 September, the second in this year’s series of International PPI Network and Cochrane Learning Live webinars was presented by Professor Lynn Hendricks, Dr Thaakirah Toefy and Mrs Rizqah Dollie who discussed their collaboration in a multisensorial arts-based community participatory study based in Cape Town, South Africa.
Due to their gender and age, young women in South Africa must often negotiate health and safety in their homes and communities. This is even more challenging for young women living with HIV. In this study, a film (available here) was co-produced that shares the stories of young women perinatally infected with HIV in Cape Town: their experiences with HIV and how they negotiated their adherence to their treatment regimens within their environments.
The collaborative filmmaking process was deeply rooted in the community, ensuring that the young women’s voices were authentically represented while addressing their safety and well-being. This approach aimed to create a safe space for the participants to share their stories, which is particularly crucial given the stigma and discrimination they often face due to their HIV status. The use of art and creative digital mediums was inclusive, innovative, and emailed to the young women. The other side of involvement was the physical safety of young women. It was not possible to always walk around with equipment in the communities for fear of violence and stigma. There is another side to patient involvement in research for vulnerable groups such as young women living with HIV in communities with high rates of violence and femicide. Ensuring that these young women felt supported and protected throughout the filmmaking process, acknowledging the personal risks they took by participating and sharing their experiences publicly.
In this webinar, the presenters discussed the co-production of the film, the successes and learnings of working with young women as co-researchers, and the importance of inclusive involvement. The session highlighted the significance of collaboration, co-creation, and co-production in public health research, emphasising how these approaches can empower communities and bring authentic voices to the forefront.
You can watch the webinar recording and download the slide deck on the Cochrane Training website: https://training.cochrane.org/resource/two-sides-of-the-camera-collaboration-cocreation-and-coproduction-in-public-health-research
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