Disease with no name

A documentary on community health workers caring for people living with HIV in South Africa

162 Honest Work Field

Picture by Honest Work

7 million people living with HIV, overcrowded waiting rooms, lack of doctors. This is the reality of the South African healthcare system. Researchers are exploring new ways to support the growing number of people living with HIV. In the Sinako research project (‘we can’ in isiXhosa), community health workers conduct home visits for people living with HIV to stimulate “HIV competence” at the household level.

The research

  • The Sinako project builds on Caroline Masquillier’s PhD thesis, which illustrates the need for community-based treatment adherence support that fosters the self-management skills of people living with HIV, and the development of HIV competence in the household. The research also highlights the importance of community-based HIV care that is sensitive to the context in which it is implemented. Insights such as these are used to guide the research teams’ current efforts to cultivate a health-enabling household context and thus to provide sustainable support to people living with HIV. This is essential, as antiretroviral treatment cohorts are likely to expand in the coming decades in a health system struggling with limited human resources.
  • Methodologically, this study adopts a longitudinal mixed methods design. To respond to our quantitative research aims, data from the cluster randomized controlled trial, will be analysed. To construct a comprehensive picture of the mechanisms underlying the impact of the intervention on the household and the individual living with HIV, various qualitative data sources will be used (i.e., participatory observations and repeated in-depth interviews with people living with HIV (PLWH), and their household members).
  • The Sinako research project investigates how to create 'HIV competent households', which adopt preventive strategies and help HIV positive members to adhere to treatment and remain in care. To this end the researchers developed an intervention, comprising seven home visits, in which the community health worker discusses the internal motivation of the person living with HIV to remain on treatment. Furthermore, the community health worker guides the patient in practicing healthy communication, discussing issues around disclosure and integrating the household in providing support.

The scientist

Research teams from the University of Antwerp (Belgium) and the University of the Western Cape (South Africa) joined forces to conduct this randomized controlled trial across several townships on the outskirts of Cape Town.

Five years after my PhD fieldwork, I’m still amazed by the important work community health workers are doing. Since the start of my research, I felt that I had to share their story. This documentary is a dream come true. It is an ode to strong women who care for those in need.

— Caroline Masquillier, Post-doc researcher

The creative

Caroline collaborated with Anne Hendriks to make this documentary. In South Africa, they got the support from two South African creatives, Garth Kingwill and Maike McNeill from Honest Work. They shared their passion about video and photography with us. Back in Belgium, Elisabeth Vermeulen joined the documentary adventures, as well as colourgrader Xavier Dockx, audiomixer Jochen Verstraete and editors Helena Overlaet-Michiels and Nico Poedts from Sliced Collective.

It felt like such a privilege to be given such intimate access into the lives of the courageous women who serve the many HIV and TB patients in their community. It's a travesty that their work gets so little recognition and financial reward. That made our jobs all the more important, to tell their stories and help to raise the profile of all community health workers. It was also very humbling and inspiring to see the strength and courage displayed by the many HIV and TB patients that we spent time with. We certainly met many heroes in our ten days of filming.

— Garth Kingwill, Fillmaker

Behind the scenes

The Public response

The documentary premiered on the Vranckx programme on Canvas channel and attracted considerable attention on the social media sites and news site of this Belgian national broadcaster. To make this première more interactive, people were invited to send in their postal address to receive a package with pictures from the documentary featuring behind-the-scenes images and more detailed information about the research project.

On the 8th of October 2020 the documentary was shown in 'het Oude Badhuis' in Antwerp. The film was followed by a Q&A with Caroline Masquillier (researcher at the University of Antwerp), Alexis Andries (Doctors of the World) and Helen N. Byarugaba (HIV activist), looking at issues around health care for those in need in global and local contexts. The Q&A was chaired by Guy Poppe. This event is the culmination of several months of collaborative working between several NGOs (Zuidcafé), the University of Antwerp and Field.

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