Social strain of chronic disease
A landmark conference hosted by the Wits Institute for Social and Economic Research (Wiser) this time last year introduced the so-called medical humanities as a new, vibrant field of enquiry and aimed to develop its presence in South Africa.
Last month, the University of Cape Town (UCT) hosted the country’s second medical humanities conference. This discipline is taking root in South Africa because of a strong convergence of academic interests and a willingness to cross traditional disciplinary and faculty boundaries in pursuit of knowledge, as shown by the growing number of social scientists employed in the health sciences and external bodies such as the medical research councils.
This has culminated in a group of academics driving the medical humanities – Steve Reid, professor of primary health care in the faculty of health sciences at UCT; historian Catherine Burns at Wiser; anthropologist Susan Levine in UCT’s school of African and gender studies, anthropology and linguistics; and anthropologist Chris Colvin, head of the division of social and behavioural sciences in public health at UCT.
Anthropologists at UCT are now leading an international medical humanities research project, funded by the university and the National Research Foundation, called the Social Markers of TB.
In 1994, the World Health Organisation declared tuberculosis a global health emergency.
In 2006, the Stop TB Partnership developed a Global Plan to Stop Tuberculosis that aimed to save 14-million lives by 2015.
Twenty years after the global health emergency was called, Dr Max Price, UCT’s vice-chancellor, outlined the five “big challenges that face South Africa”, listing HIV and Aids and tuberculosis as “our biggest public health problems”.
The targets set by these global health entities are unlikely to be met, mostly because of the increase in HIV-associated tuberculosis and, more alarmingly, the emergence of drug-resistant strains of the disease.
South Africa – haunted by a legacy of apartheid governance that left millions in almost absolute poverty, in conjunction with an already critical HIV and Aids epidemic – has among the highest tuberculosis morbidity and mortality rates in the world.
Both the international and localised prevalence of the disease and the materialisation of virulent strains remind public health institutions, primary care officials, governments and communities of the failure to eradicate a curable disease.
The burgeoning tuberculosis epidemic South Africa is facing highlights the necessity for all researchers to commit to study the social and political tropes of the infection in order to contribute to, complement or challenge scientific expertise and medical practice. Integrating disciplines allows for a more dynamic understanding of infectious diseases that cannot be advanced by any school of thought in isolation.
The Social Markers of TB project takes up Dr Price’s challenge. Its rationale stems from a dominant trend in the global health response to tuberculosis: the emphasis placed on biomarkers.
Selective healthcare advocates a more economically feasible approach to primary healthcare by only targeting specific areas of health, and choosing the most effective treatment plan in terms of cost and effectiveness. Current funding for tuberculosis is directed towards developing rapid diagnostic tests that are low cost, simple to use, and can quickly and accurately diagnose tuberculosis in low-resource settings.
A similar trend has been a shift from producing post-diagnostic antibiotics to producing vaccinations that preclude the onset of tuberculosis. These are essential, but selective healthcare favours short-term goals – it does not address the social causes of disease.
We argue that the availability of various biomedical/scientific technologies will not necessarily lead to more diagnoses. Similarly, more diagnoses will not translate into higher cure rates and lower frequency of transmission.
The size of the problem, the failure of treatment protocols and the difference between theory and reality all contribute to the disease remaining one of “the biggest challenges that faces South Africa”.
These issues highlight the need to interrogate how relations between infected individuals and their families and those who provide treatment play out in everyday health behaviours. State treatment services must mirror the complexity of a patient’s life; they cannot merely be a “one size fits all” model.
The Social Markers of TB project is inspired by both local initiatives and international programmes in the medical humanities, global health and arts-in-medicine to bring further insight to the provocative issues surrounding tuberculosis. The project serves as a lynchpin tying together the schools of public health, dedicated research units, anthropology, sociolinguistics, physiotherapy, drama, fine arts and historical studies.
We share a vision of “working in and out of disciplines” and of “working together, working with emergent methods”. As scholars we are attempting to ask new questions, push new boundaries, and discover the right tools for the questions we ask. As researchers we are interacting not only with doctors, nurses and their administrative staff, people who have tuberculosis, their families and other community members, but also with biomedical technology, buildings and, indirectly, the multiplicity of external forces shaping the dynamics of the local field sites.
Here are some examples of the kind of collaborative work achieved to date. Dr Kate Abney’s study of tuberculosis-related stigma in the Cape Town metropolitan area convincingly showed that perceptions and experiences of the disease are shaped around the organising linguistic image of “dirt” – which is implicated as a cause of TB.
This finding exposed the paradox of taxi passengers closing windows, or refusing to open them on request, reasoning that outside air was a cause of illness transmission because it was cold or “dirty”.
It is estimated that more than 40% of Cape Town residents use taxi transportation in addition to buses and trains. The tragic irony is that not opening a window may exponentially increase one’s risk of infection through exposure to particles trapped inside the taxi. Dr Abney has subsequently made links to the taxi industry and medical engineers to think through and possibly design new ventilation systems.
Using drama as education
In another innovative example, the South African Tuberculosis Vaccine Initiative teamed up with UCT’s anthropology and drama departments to test the value of drama to improve adolescents’ insight into tuberculosis and vaccine development, clinical research and their rights and responsibilities as trial participants.
High school pupils from the Worcester area dramatised the South African Tuberculosis Vaccine Initiative’s trial educational and recruitment comic, Carina’s Choice. In collaboration with the UCT drama school, eight further performances followed. Lessons learned from the project highlight key areas of confusion about tuberculosis transmission and symptom awareness.
As a final example, physiotherapists have approached anthropologists to research patients’ experiences of pulmonary disability after “cure”, a medical phase largely ignored in research. Here we hope to broaden the definition of disability by placing it in its biological, social, cultural and political contexts.
The anthropologists will investigate the socially disabling effects of the disease, such as stigma and medical payments that leave families economically vulnerable. The physiotherapists will ascertain the benefit of a pulmonary rehabilitation intervention to improve functional outcomes.
Each of these projects serves to build research capacity, develop medical humanities in South Africa, and inform new strategies and practices in the implementation of the right to health.
Dr Helen Macdonald lectures in anthropology in the department of African and gender studies, anthropology and linguistics at the University of Cape Town. The university, the National Research Foundation and the Wellcome Trust are funding her Social Markers of TB research project Social strain of chronic disease