What do adaptations tell us about the production of trust? Shifting the ‘burden of change’ from people to the response

This article, based on our research project on ‘Humanizing the design of the Ebola response in Eastern DRC’, examines the role of adaptation in the production of trust. The project has been chiefly concerned with exploring how humanely designed care and treatment for Ebola contribute to the formation of trust. In past epidemics, the need to provide safe care and treatment of Ebola patients posed enormous ethical challenges for health workers and relatives wishing to provide the best care possible. Christopher J.M. Whitty et al, ‘Tough Choices to Reduce Ebola Transmission’, Nature, 515, 2014; Paul Richards, Ebola: How a People’s Science Helped End an Epidemic (London: Zed Books, 2016); S.J. Park and G. Akello, ‘The Oughtness of Care: Fear, Stress, and Caregiving During the 2000–2001 Ebola Outbreak in Gulu, Uganda’, Social Science & Medicine, 194, 2017 (https://doi.org/10.1016/j.socscimed.2017.10.010. www.ncbi.nlm.nih.gov/pubmed/29073506). In the West Africa Ebola epidemic, practitioners, patients and observers alike were at times appalled by the conditions under which patients were isolated in Ebola Treatment Centres (ETCs).

Since the epidemic in the DRC began in 2018, more than 3,400 cases have been recorded, and 2,240 people have died, making this the second-largest Ebola epidemic in history. One crucial lesson from past epidemics, and one that was applied in the current Ebola response in Eastern DRC, is the use of novel treatment facilities called CUBE (Biosecurity Emergency Care Units), developed by the medical relief organisation ALIMA. These facilities consist of chambers with transparent plastic walls, which allow medical staff to provide more individualised care. Relatives can easily visit their loved ones and observe them through the transparent walls, and doctors can perform life-saving interventions quickly without the need to wear full personal protective equipment (PPE). Together with new therapies trialled during the epidemic, these innovations dramatically reduced case fatality and improved the acceptability of the response.

These innovations in the clinical care of patients have been introduced in an environment of mistrust between emergency responders and communities. This mistrust cannot be easily repaired without addressing the larger political, historical and social context of the epidemic. James Fairhead, ‘Understanding Social Resistance to the Ebola Response in the Forest Region of the Republic of Guinea: An Anthropological Perspective’, African Studies Review, 59(3), 2016. Terms such as mistrust and resistance point to a broad range of interlinked issues, including weak health systems, neglect and insecurity, and influence how emergency response teams and communities relate to each other in Eastern DRC. Vinh-Kim Nguyen, ‘An Epidemic of Suspicion: Ebola and Violence in the DRC’, New England Journal of Medicine, 318, 2019; Eugene T. Richardson, Timothy McGinnis and Raphael Frankfurter, ‘Ebola and the Narrative of Mistrust’, BMJ Global Health, 4, 2019.

Early humanistic conceptions of care for Ebola and the social study of adaptation

Anthropologists have long underlined the importance of ‘humanistic’, culturally relevant conceptions of care and the need to develop ‘alternative culturally sensitive’ strategies for the isolation of patients to enhance community acceptance of the emergency response. Barry Hewlett at al., ‘Medical Anthropology and Ebola in Congo: Cultural Models and Humanistic Care’, Bulletin de la Société de pathologie exotique, 98, 2005. New treatment facilities like the CUBEs are in many ways a realisation of this humanistic conception. They underscore the importance of proximity, for example by allowing relatives to visit their loved ones, and show that these innovations contribute to improved clinical care. Hannah Brown and Almudena Marí Sáez, ‘Ebola Separations: Trust and Crisis in West Africa’, Journal of the Royal Anthropological Institute, forthcoming. In addition to the development of culturally sensitive strategies, the research has been concerned with extending our analysis to the study of materials, technologies and infrastructures that make alternative forms of care possible. Hannah Brown et al., ‘Extending the Social: Anthropological Contributions to the Study of Viral Haemorrhagic Fevers’, PLoS Negl Trop Dis, 9(4), 2015; Stacy Leigh Pigg, ‘Found in Most Traditional Societies’: Traditional Medical Practitioners between Culture and Development (Berkeley, CA: University of California Press, 1997). Paying attention to these material and technical objects allows us to study how actors and organisations adapt their responses to specific contexts and problems. Pigg, ‘Found in Most Traditional Societies’.

Humane designs of care and treatment are a case in point for exploring adaptation as a social activity. When we began our research in August 2019, our interlocutors were deeply concerned with understanding how the emergency response had gone awry, for example by the expensive recruitment of non-local staff, which had angered local communities. Like other researchers, the project has been looking more carefully at the sources of this mistrust. In November 2019 we began to ask how the designs of ETUs were adapted to build trust and thereby repair the relationship between the response and communities. Our interlocutors spoke with great confidence about the various changes they had been initiating to ‘adapt to the communities’. Such insights are fundamental to developing creative and (partly) unplanned measures to improve the relationship between responders and communities, and show how standardised blueprints can be adapted to concrete and unique circumstances. Andrea Behrends, Sung-Joon Park and Richard Rottenburg, Travelling Models: Introducing an Analytical Concept to Globalisation Studies (Leiden: Brill, 2014).

Adaptations of humane care beyond ETCs

An exemplary case of adaptation was the decentralisation of care initiated by Médecins Sans Frontières (MSF) and ALIMA from March 2019 onwards. In Beni, one of the hotspots of the epidemic, MSF France started devolving testing and the isolation of suspected cases to public health centres. Beforehand, Beni had had one transit centre (for suspected patients) and one Ebola treatment centre (for confirmed cases). The new structures, called temporary transit centres (centres de transit temporaires), aimed at bringing Ebola-related health services closer to communities. An important component of this initiative was to support these transit centres in the provision of free care for all health conditions, to counter the tendency to reduce healthcare simply to Ebola, which had angered communities who felt that their wider health needs had for many years been neglected.

The temporary transit centres have an isolation unit in the compound comprising two or three chambers where patients are isolated until results arrive. If the tests are positive, they are taken to the ETC. The chambers resemble the isolation units in the main ETCs. Each room has a bed, a chair and a toilet. Relatives visiting their loved ones stand at a railing outside the isolation rooms. This decentralisation was not necessarily planned: as the MSF coordinator for Nord Kivu told us, it was initiated as a response to attacks on ETCs in Katwa in February 2019, which marked the beginning of a second wave of transmission.

Initially, other response organisations were reluctant to follow MSF’s approach, though after a few weeks most had adopted the model under the label ‘decentralised transit centre’. Staff working at the health centres we studied often stressed that, while support came international organisations, local communities had started to take ownership of the transit centres. According to health workers at the centres, attendance rates had increased significantly. As one explained:

it’s a good initiative because the population feels responsible for the structure. They want the health centre to reach even 1,000 consultations and that all of the women come here to give birth. The population has appropriated the centre and complain if a staff member hasn’t done his job properly.

A range of adaptations was also introduced to the existing infrastructure of the Ebola response. In particular, staff at the main transit centre in Beni emphasised how many changes had been made. They had set up a restaurant and a tent to provide privacy for counselling relatives of patients, and installed a latrine in the waiting area. These improvements may sound like basic changes, but as one doctor explained, if ‘you ask people to be there from 8am to 2pm … during that time you may need to pee’. Yet, as he went on to explain, ‘Imagine, in this [transit centre], we have been asking for three months to build a latrine here at the reception desk’. He recalled how even having a debate about this at all was seen to be ‘too demanding’: ‘why in Congo do you need something of such high standard?’. He countered such complaints by saying ‘being Congolese doesn’t mean you have to suffer’; he was convinced that changes to improve care for Ebola patients should not be too onerous, and are often not even expensive.

The meaning of ‘humanising’ patient care

Looking at adaptations to improve care and treatment beyond ETCs provides crucial insights into the production of trust. It shows how new treatment facilities can be adapted to reorganise modalities of care within public health systems, thereby giving rise to new approaches. As they are embedded in social interactions and infrastructures, adaptations can occur unexpectedly, arising out of the lived experiences of health workers, through negotiations between different actors and a recognition that care for patients has to improve.

Our research shows that adaptations to humanise care are not always readily accepted by decision-makers. Reluctance to implement innovations may stem from considerations of biosafety requirements or cost concerns. Yet, the creation of temporary transit centres highlights the crucial point that communities participate in determining what adaptations are worth copying because they are perceived as useful in improving health and safety. Such adaptations in turn have a greater chance of being ‘owned’ by communities. Joao Biehl, ‘Theorizing Global Health’, Medicine Anthropology Theory, 3(2), 2016; Richards, Ebola.

Ignoring modes of cooperation based on mutual respect risks enforcing boundaries between different actors in the response, notably between local and non-local staff or the response and the community, fuelling a distinction between ‘us’ and ‘them’, which reproduces mistrust. This mistrust is a social consequence of the architecture of the response. Adaptation, by contrast, demonstrates how crucial it is to shift the burden of change from people to the response.

Sung-Joon Park (Martin-Luther-University Halle-Wittenberg, Germany); Nene Morisho (Pole Institute, DRC); Kennedy Wema Muhindo (Pole Institute, DRC); Julienne Anoko (Rene Descartes Paris V, La Sorbonne, France/WHO-AFRO); Nina Gobat (Oxford University, GOARN); Hannah Brown (Durham University, UK); Matthias Borchert (Robert-Koch-Institute, Germany).

This article is based on field research for the project ‘Humanizing the design of the Ebola response in DRC: anthropological research on humane designs of Ebola treatment and care to build trust for better health outcomes’, funded by Elhra. The research partners are grateful for the institutional support of GOARN/WHO and other partners in the field.