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Beyond the lab: Eh!woza and knowing tuberculosis
  1. Bianca Masuku1,
  2. Nolwazi Mkhwanazi2,
  3. Ed Young3,
  4. Anastasia Koch1,
  5. Digby Warner1,3
  1. 1 SAMRC/NHLS/UCT Molecular Mycobacteriology Research Unit, Department of Pathology, Institute of Infectious Diseases and Molecular Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa
  2. 2 Wits Institute for Social and Economic Research (WiSER), University of the Witwatersrand, Johannesburg, South Africa
  3. 3 Wellcome Center for Infectious Diseases Research in Africa, Institute of Infectious Diseases and Molecular Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, Western Cape, South Africa
  1. Correspondence to Miss Bianca Masuku, SAMRC/NHLS/UCT Molecular Mycobacteriology Research Unit, Department of Pathology, Institute of Infectious Diseases and Molecular Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town 7700, South Africa; biancamasuku{at}gmail.com

Abstract

Eh!woza is a public engagement initiative that explores the biomedical and social aspects of tuberculosis (TB) in South Africa. The project is a collaboration between scientists based in an infectious disease research institute, a local conceptual/visual artist, a youth-based educational non-governmental organization (NGO) and young learners from a high-burden TB community. The learners participate in a series of interactive science and media production workshops: initially presented with biomedical knowledge about TB and, in later sessions, are trained in creating documentary films and engage with ideas around visual representation. The participants are encouraged to make use of this newly acquired knowledge to tell stories from their chosen communities in Khayelitsha, a township in Cape Town. Through its engagement with the complex manner in which TB is experienced, framed and understood by biomedical scientists, young people, and those who have been affected by the disease, Eh!woza presents alternative ways of exploring the complexities of human illness. The integration and interrogation of biomedical understandings, lay narratives and the young participants’ framing of the disease poses questions about ’knowing', and the meanings people attribute to ways of ’knowing' and the actions they impel. The project also presents contrasting reflections on cure—from a biomedical perspective, and care—from the perspective of TB-affected young people and community members. In this article, we describe the Eh!woza project, present thoughts from the participating students on the science and media workshops, and detail the narratives of ill-health and disease from people within their neighbourhoods. We conclude with a critical analysis of the complexities of knowledge communication, notions of cure versus care, and a consideration of the potential contribution of this project to the growth of medical humanities in Africa.

  • TB
  • biomedicine
  • youth
  • knowledge
  • public engagement
  • film

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Footnotes

  • Contributors BM designed and conducted the fieldwork, collected and analysed the data, and drafted and revised the paper. She is a guarantor. NM wrote the concluding arguments, guided the analysis, provided overall conceptual input and revised the paper. EY provided conceptual input, wrote the background section and revised the paper. AK provided conceptual input, wrote the background section and revised the paper. DW provided overall conceptual input, guided analysis and revised the paper.

  • Funding This study was funded by National Institute for the Humanities and Social Sciences (BM); Wellcome Trust (grant number: WT103544MA, WT208714/Z/17/Z); South African National Research Fund (Grand number: CEC 14061068623); CIDRI-Africa and the SAMRC.

  • Competing interests None declared.

  • Patient consent Not required.

  • Ethics approval Human Ethics Research Committee of the Faculty of Health Science at the University of Cape Town (HREC 509/2017, HREC 255/2014).

  • Provenance and peer review Not commissioned; externally peer reviewed.