Tuberculosis patients and resilience: A visual ethnographic health study in Khayelitsha, Cape Town

Khayelitsha, one of the biggest and poorest townships in South Africa, has a well-resourced tuberculosis (TB) programme with an interdisciplinary approach addressing the medical, social, and economic forces impacting TB care. Nevertheless, the area remains burdened with one of the highest TB rates in the world. Using a resilience-based approach, we conducted a critical ethnographic study to develop deeper insights into the complexities of patients' experiences with TB and care. Between October 2014 and March 2015, we approached 30 TB patients, 10 health-care workers, 10 pastors, and 10 traditional healers, using participant observation, in-depth interviews, and focus group discussions. In addition, seven key informants were filmed on a daily basis by the lead researcher. The work reported here (both text and short videos) illustrates the various manifestations of resilience that patients demonstrated and how these impacted on decisions involving treatment seeking and adherence. We have synthesized the data into the following inter-related themes: TB aetiologies and treatment; the embodied experience of TB treatment; alcohol consumption; financial constraints; and support and stigma. The findings from this research highlight patients' strategies for adapting to adversities, such as pausing TB treatment when lacking food to avoid becoming psychotic, consuming alcohol to better cope, obtaining social grants, and avoiding stigmatizing attitudes. Some manifestations of resilience may interact and, inadvertently, undermine TB patients' health. Other aspects of resilience, such as strong community ties, elicited long-term health benefits. TB programs would benefit from a resilience-building approach that builds on pre-existing strengths and vulnerabilities of TB patients and their communities. With the use of short videos, we provided patients with an alternative path for expressing their experiences, which we hope will support synergies between patients, researchers, and policy-makers for improved TB programmes.