Why we need to improve the lives of Ebola survivors as part of prevention

12/11/2014

Pauline OosterhoffPauline profile

The world is paying plenty of attention these days to Ebola infections and deaths. It is paying much less attention to helping Ebola survivors recover and reintegrate. This is a mistake, not just because survivors need help (they do), but because helping survivors is one of the most important tools for preventing the further spread of the disease. As West African Ebola survivors return from medical facilities into society, they report to their friends and families on what they have experienced there, on the quality of treatment and terminal care for the dying. Their testimonies affect the willingness of others to seek care in these facilities. If people in the broader community hear stories of inadequate treatment and neglect from survivors, or if survivors are ostracised on their return, then the community will resist public-health efforts, hide infected family members and refuse to cooperate with medical institutions. This helps the virus spread.

In other words, decent treatment of Ebola victims when they are in medical facilities, and helping survivors to reintegrate and regain their livelihoods afterwards, are critical to slowing the epidemic. But in the traumatised, fearful communities struck by the disease, Ebola survivors are often stigmatised and destitute when they return. Many are plagued by survivors’ guilt and depression. Their social support networks may be damaged by the deaths of caregivers, relatives and friends. Neighbours, or even their own children, are scared of them. Their houses, utensils and even their food reserves have sometimes been burned in efforts to destroy the virus. The interrelated effects of stigma, fear and poverty are highlighted in Alain Epelboin’s film “Ebola is Not a Laughing Matter”, about his experiences working with Red Cross workers from Congo.

How can organisations help Ebola survivors reintegrate?

A number of ideas are being mooted. One international organisation has tabled the idea of giving survivors jobs burying the dead. Given the stigma they already suffer from, this idea clearly has some risks. Another idea is to get survivors to play the crucial role of donating their convalescent blood and plasma products, which may have antibodies that can help others survive. But in areas long rife with rumours of organ trading, this raises issues as well.

Anthropologists, with their expertise in how cultures, institutions and physical phenomena interact, can help answer these types of questions. But surprisingly few anthropologists have worked recently in the West African countries most affected by Ebola. Some of the most detailed ethnographic literature on daily life in these countries dates back to the colonial era; more recently, participatory observations and fieldwork have been hindered by decades of instability and conflict. But health professionals need anthropologists’ expertise on highly specific aspects of daily life, such as burial practices and managing bodily fluids, in order to provide clear and practical advice on the outbreak and build locally appropriate interventions.

The concept of giving survivors a livelihood by employing them for burial ceremonies was recently raised at the UK-based Ebola Response Anthropology Platform (ERAP). Survivors’ immune systems are more likely to be resistant to contracting Ebola from otherwise highly contagious corpses, improving prevention. Besides income, the job would give survivors an important new role in their old communities. This idea is apparently particularly popular among some of the religious organisations working on the ground in West Africa. Employing stigmatised survivors to bury Ebola casualties sounds like a great idea. But as any anthropologist student can tell you, ideas that make perfect sense from one perspective can make less sense from a different one.

Exploring ideas from all perspectives 

When I invited members of ERAP to contribute their views, it became clear that this potentially innovative idea still needed quite a bit more thought. Medical burial teams have already antagonised many communities through culturally unacceptable burial methods: cremation, improper handling of the dead, concealing the dead person’s face, and so on. James Fairhead, of the University of Sussex, pointed out that given these tensions, the proposal would be “giving an already ostracised group (i.e. Ebola survivors) the role of burying others in what is often a highly disapproved-of way. The question arises: is this likely to (a) add to the stigma of that group, and (b) add to the negative image of the ETCs (Emergency Treatment Centres)… One needs to avoid as much as possible negative attitudes to ETCs (or the more decentralised units) as it is going to become so important that people come to them voluntarily to seek health.” Organisations can engage with communities to overcome these contradictions, but that may or may not work. Community engagement on the employment of survivors in burial ceremonies has to take these perceptions into account, and not be dismissed as “stigma”.

Paul Richards and many other anthropologists have pointed out that “community myths” or “misperceptions” are often grounded in reality, or in incomplete information. That semen is still infective up to 90 days after recovery makes Ebola also a sexually transmitted disease. Campaigns have not focused on the sexuality of Ebola survivors or on breastfeeding mothers. Breast milk also has to be avoided up to 90 days after recovery. The Ebola Survivor who was said to have ‘Infected his Wife to Death’ is likely to have done this through sexual contact. People unaware of these transmission vectors who then witness wives or children of survivors contract Ebola and die may come to fear all interactions with survivors. Avoiding people who have contracted a disease can be perfectly rational behaviour if you lack accurate information on how the disease is communicated. It is important to avoid exoticising or pathologising such behaviour, and to instead obtain a factual comprehension of the behaviours or situations that result in survivors being stigmatised. In some cases, social avoidance of survivors may have nothing to do with Ebola, but with the fact that survivors are destitute, needy and miserable, and people want to avoid feeling guilty. This is quite similar to the widespread social rejection experienced until recently by child soldiers or cancer and HIV patients.

Employing survivors to bury the dead with dignity has powerful emotive and spiritual resonances; it is easy to see why the idea appeals to religious organisations. But as Fairhead points out, one can “appreciate religious institutions as compassionate towards the ostracised,” while also recognising that some of the practices they find appealing may be divisive. Before deploying suggestions for reintegrating Ebola survivors in West Africa, it is important to have a sense of how these initiatives will actually be received in the local cultural context, in the midst of a raging epidemic. And getting the recovery and reintegration of survivors right, and making them allies in prevention efforts, is crucial to the effort to stop the spread of the disease.

Pauline Oosterhoff is a research fellow at the Institute of Development Studies and a member of the Ebola Response Anthropology Platform

The Ebola Response Anthropology Platform is a joint effort of the London School of Hygiene & Tropical Medicine, the Institute of Development Studies, the University of Exeter and the University of Sussex

Previous blog posts by Pauline Oosterhoff:

Advertisements