How can we help Ebola survivors?

The West African countries of Guinea, Sierra Leone and Liberia have now been battling an Ebola epidemic for almost two years. Although new cases have been falling for some time, it is only recently that a possible vaccine has been found successful and the epidemic now finally seems to be coming under control.

To date, in West Africa, over 28,000 people have been affected. Over a third of those people have died but almost two thirds have survived. While most research has so far rightly concentrated on containing and curing the disease, we should now turn to rebuilding public health systems and planning the long-term care needs of survivors – and all West Africans.

From surviving Ebola to living with it

We know from previous outbreaks of Ebola – for example, in the Democratic Republic of Congo – that survivors can suffer problems with their vision, hearing or joint pain. Some studies have shown these issues can last for at least two years after a patient is diagnosed with the disease and that they can also develop cognitive problems such as memory loss.

Evidence also indicates that the Ebola virus can remain in vital organs such as the eyes for months, even when no other symptoms are present, potentially leading to a re-emergence of the disease. And survivors are currently advised to use condoms until doctors can be sure the virus is gone. Research evidence is unclear how long this can take.

The problem is healthcare provision for Ebola survivors in affected countries currently focuses on short-term clinical treatment rather than long-term planning for a chronic condition. Survivors need access to specialist visual, hearing, mental and reproductive healthcare services and professionals. But the needs of Ebola survivors stretch far beyond immediate medical treatment, encompasssing long-term monitoring and access to rehabilitation and culturally sensitive mental health services.

We don’t yet understand what the full lifetime effects will be on young children who survive the disease, especially those that have been orphaned or are living in poverty. But we do know that some of the physical effects of the disease can create long-term disabilities as such as vision loss. The consequences for people who lose family members and social networks can also be profound and lead to psychological problems such as emotional anxiety and depression, and even survivor guilt.

More widely, there are major social and economic consequences for Ebola survivors, who may have lost their support networks, employment and even their possessions during the infection control process. We also know that people suffer the effects of a global and local stigma towards Ebola and may be shunned by their communities, unable to even enter shops to replace their lost belongings.

Meeting community needs

Governments, donors and voluntary organisations have all taken steps to help reintegrate Ebola survivors into their communities. For example, they have provided packages of clothes and other everyday items, worked with community leaders to address stigma and encouraged survivors to take a role in providing support to help restore their dignity. Psycho-social care has so far focused largely on creating support groups and social protection schemes. Getting the different groups involved to provide specialist care but also to monitor and support each other would seem like another step in the reintegration process.

But what is really needed is a response that benefits the whole community, one that is also aware of how health inequalities affect women, children and disabled people. This would begin by asking patients, their families and local communities about their public health needs, using community meetings to better understand the barriers to accessing care. In turn, this would open the debate up to improving the health of everyone and not just the health system.

In poor countries that have experienced recent conflict, such as Sierra Leone and Liberia, global and local health policy has neglected these issues of equality and democracy. As a result, health systems don’t adequately reflect local needs and leadership isn’t held accountable. More also needs to be done to link social care and specialised health services while rebuilding local capacity.

Instead of trying to impose public health policies and structures on communities, organisations need to make sure local people and governments have more of a bottom-up democratic role in creating their own health systems. Public health work becomes more sustainable when it reflects specific local health needs and prioritises investment and payment of healthcare workers. Rebuilding is also about the entire public health system including linked transport, education, housing and sanitation infrastructure.

People with chronic health issues, such as the long-term effects of Ebola, will need a variety of services to help them rebuild and carry on with their lives. For this to work, all health and social care services have to become used to dealing with disabled patients as a matter of routine. This urgently needs to become a mainstream reality in all policy and practice.

This article is published in collaboration with The Conversation. Publication does not imply endorsement of views by the World Economic Forum.

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Author: Maria Berghs is a Research Fellow at the University of York.

Image: Liberia’s last known Ebola patient arrives for a ceremony at the Chinese Ebola treatment unit. REUTERS/James Giahyue.