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Community engagement with HIV drug adherence in rural South Africa: a transdisciplinary approach
  1. Astrid Treffry-Goatley1,2,
  2. Richard John Lessells3,4,
  3. Relebohile Moletsane5,
  4. Tulio de Oliveira3,4,
  5. Bernhard Gaede6
  1. 1 Centre for Visual Methodologies for Social Change, University of KwaZulu-Natal School of Education, Durban, South Africa
  2. 2 African Health Research Institute, Durban, South Africa
  3. 3 KwaZulu-Natal Research and Innovation Sequencing Platform (KRISP), School of Laboratory Medicine and Medical Science, College of Health Science, University of KwaZulu-Natal, Durban, South Africa
  4. 4 Centre for the Aids Programme of Research in South Africa, Durban, South Africa
  5. 5 Centre for Visual Methodologies for Social Change, University of KwaZulu-Natal, Durban, South Africa
  6. 6 Family Medicine, University of KwaZulu-Natal, Durban, South Africa
  1. Correspondence to Dr Astrid Treffry-Goatley, Centre for Visual Methodologies for Social Change, University of KwaZulu-Natal, School of Education, Durban 3605, South Africa; Treffry-Goatley{at}ukzn.ac.za

Abstract

Digital storytelling (DST) is an emerging participatory visual method which combines storytelling traditions with computer and video production technology. In this project, at the heart of the HIV epidemic in KwaZulu-Natal, South Africa, we used DST to create a culturally grounded community engagement intervention. Our aim was to use narratives of people living with HIV on antiretroviral therapy (ART) to stimulate dialogue among the wider community and to encourage reflection on the contextual factors that influence ART adherence in this setting. We also wanted to explore whether exposure to the personal narratives might influence health literacy around HIV and ART. We ran two DST workshops, where 20 community participants were supported to create short digital stories about personal experiences of adherence. We then hosted 151 screenings of the digital stories at seven local health facilities and evaluated the impact of the intervention using a three-tiered mixed methods approach. We conducted two independent quantitative surveys of healthcare users (852 respondents during the preintervention round and 860 people during the postintervention round), five focus group discussions and observation of practice. Exposure to the digital stories did stimulate rich dialogue among community members, which broadened from the focus on ART adherence to other aspects around the impact of HIV and its treatment on individuals and the community. In the independently conducted surveys, we found no clear difference in knowledge or understanding of HIV and ART between the people exposed to the digital stories and those who were not exposed. Our findings provide support for the use of DST as an engagement intervention, but highlight some of the challenges in delivering this type of intervention and in evaluating the impact of this approach.

  • health care education
  • film
  • Hiv/aids
  • aarrative medicine
  • patient narratives

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Contributors Conception or design of the work: AJT-G, TdO, RM. Data collection: AT-G. Data analysis and interpretation: AT-G, RM, RJL. Drafting the article: AJT-G, RM, RJL, TdO, BG. Critical revision of the article: AJT-G, RM, RJL. Final approval of the version to be published: AJT-G, RM, TdO, BG, RJL.

  • Funding The project is funded through a Wellcome Trust International Engagement Award (Award number WT099669MA).

  • Competing interests None declared.

  • Patient consent Not required.

  • Ethics approval Ethics approval was obtained from the University of KwaZulu-Natal’s Biomedical Research Ethics Committee (BREC) in 2013 (2013–2015) (BE203/13). Written informed consent was obtained from all participants.

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

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