Ebola: Sierra Leone research reveals how cultural sensitivity stemmed the epidemic

Faith leaders were key in raising awareness of Ebola prevention messages.

Today, on the occasion of the Global Disability Summit, the UK Government became the first major donor of its kind to explicitly pledge support for family and community-based care for all children.

Championing families and not orphanages, Secretary of State for International Development, Penny Mordaunt, announced: “Orphanages are harmful to children and it is often those with disabilities who are placed in them the most. This needs to end, which is why I’m committed to the long-term plan to ensure all children grow up with a family of their own.”

An NGO alliance including Hope and Homes, Lumos, Save the Children and World Vision - have joined forces to echo the UK Government’s commitment and support global change for children trapped in orphanages, especially those with disabilities who are the furthest left behind. The launch ofthe new ‘Civil Society Compact [CSO Compact]’ sets out a pathway for change to help eliminate orphanages worldwide.

“Recognising that institutionalisation harms children – and that children with disabilities are overrepresented in institutions –we commit to work together toward eliminating the institutionalisation of children globally. Ensuring our organisations do not contribute towards the institutionalisation of children, directly or indirectly - and in line with international treaties and best practice, we share the UK Government’s pledge to enable all children to have the opportunity to realise their right to family care.”

World Vision is a proud signatory to the CSO Compact, which is set out in full below.

Now is the time for other governments, funders, companies and individuals to follow suit and invest in alternatives to orphanages so all children can thrive in families.

CSO COMPACT

Recognising that institutionalisation harms children’s physical, emotional, psychological and psychosocial development, the undersigned organisations pledge to work toward the end of institutionalization of children and for the promotion of family-based care.

The occasion of the first Global Disability Summit makes this a particularly appropriate moment for this commitment, since children with disabilities are often the first to enter an institution and the last to leave.

In-line with international treaties and best practice, including the UN Guidelines on the Alternative Care of Children, UN Convention on the Rights of the Child and UN Convention on the Rights of Persons with Disabilities, we share the UK Government’s pledge to enable all children to have the opportunity to realise their right to family care and, in accordance with the 2030 Agenda for Sustainable development, commit to leave no child behind in this effort.

We are committed to ensuring our organisations do not, either directly or indirectly, contribute towards the institutionalisation of children. We are also committed to coordinating our activities and resources to maximise our collective efforts to support the transition to family and community-based care worldwide. Specifically, we commit to coordinating around six key themes:

Raising awareness and understanding in a way that stops the flow of funding and resources in support of orphanages and other types of institutions, and helping to redirect this support to family and community-based solutions.  We will also seek to influence our partners, supporters and donors to work in a coordinated way to do the same.

Encouraging the integration of child protection and care services with health and education support in order to promote family-based care and ensure that the wide-ranging needs of children with disabilities and their carers are met.

Advocating with decision-makers - international and national - to prevent the placement of children into institutions, and to ensure that legislation and policy are always derived from a locally developed evidence base on how to best combat the key drivers of institutionalisation.

Investing in (whether financial or in-kind) local partner capacity – civil society and local authorities – to effectively manage the transition from institutions to quality family and community-based care in ways that protect the rights of affected children.

Promoting the meaningful participation of children and young people - actively seeking out, listening to and acting on the views and opinions of the young people and children we work with, and where safe and appropriate to do so, giving them a platform to share their views and ideas more widely – paying particular attention to ensuring gender balance, and the inclusion of children with disabilities and other minority groups.

Researching and generating an evidence base about key issues such as:

·       best practice interventions to address the key drivers of institutionalisation;

·       the proliferation and poor quality of care in these institutions;

·       ways to challenge the invisibility of children in institutions, especially children with disabilities;

·       the most appropriate alternative care options for children who cannot live with their own biological family.

To achieve this we will work together to share our data, research findings, methodologies and support countries to gather better data and monitor outcomes for all children. In doing this we will seek to Increase the visibility and understanding of disability issues in children’s care and protection through wider research and routinely disaggregated data collection.

List of signatories

1.     Save the Children UK

2.     World Vision

3.     Plan International UK

4.     Human Rights Watch

5.     Islamic Relief Worldwide

6.     Disability Rights International

7.     Hope and Homes for Children

8.     Lumos

9.     DeafKidz International

10.  Home for Good

11.  Better Care Network

12.  Friends International

13.  Chance for Childhood

14.  HealthProm

15.  Forget Me Not Australia

16.  Next Generation Nepal

17.  One Sky Foundation

18.  Global Initiative to End All Corporal Punishment of Children

Global heath experts are once again on their toes as another Ebola outbreak has been declared in the Democratic Republic of Congo (DRC).

According to the World Health Organisation (WHO), the number of suspected cases of Ebola has risen to over 43 from nine in less than two weeks in an isolated part of the DRC, where three people have died from the disease since April 22.

The last outbreak in West Africa killed more than 11,300 people across four countries. Now, Ebola appears to be back, bringing with it arguments, recriminations, accusations and counter-accusations of whether the right decisions and choices are made when outbreaks erupt.

3 years ago, Sierra Leone recorded its first Ebola case on 25 May 2014. However, an emergency was not declared until August: 6 months later. But it’s a mistake to believe that the delay in an emergency response was the main driver behind the thousands of infections and deaths that were recorded across West Africa.

As a recent study entitled Protecting the Living, Honouring the Dead attests, cultural insensitivity to local burial practices, was the main driver fuelling the high rate of Ebola infections in most communities.

Almost all of the bereaved families we interviewed who lost relatives between May and November 2014 did not appreciate burials done by the early burial teams across the districts covered. 71 per cent of families who lost someone in the first six months of the crisis reportedly did not witness the burial of their relatives, and only 19 per cent were involved in the burial in some way.

We decided to tackle the issue by training people to handle and bury the dead in a way a cultural sensitive way. We trained burial workers – many of whom were survivors themselves – to observe religious and cultural funeral practices.

I’ve worked on the West African Ebola emergency response from the early outbreak in 2014 up to the present day, and it is a mistake to place blame solely on delayed action. As aid workers suspected, and now this report confirms, it was the failure to respect traditional burial customs - and wider ignorance of the virus - that contributed to thousands of Ebola deaths in Sierra Leone.

I hope that the latest outbreak of Ebola in northern DRC will remain “isolated, remote, and small”. The location of the affected area appears to have helped contain the spread of the virus. Hopefully the Congolese health authorities have it under control. This is their fourth Ebola outbreak in 15 years. They seem to understand the virus and have a good track record on containment.

The situation in Sierra Leone in 2014 could not have been more different. Nobody had heard of Ebola. And when people started to die locals believed that it was witchcraft, government lies anything but the fatal infectious virus that scientists and NGOs were talking about.

The arrival of burial teams clad in head to toe in white overalls, goggles and face masks struck fear into the minds of Sierra Leoneans. In the early days of the epidemic, burial workers gathered bodies without a thought for traditional funeral practices. Bodies were piled high and disposed of as efficiently as possible. There were no ceremonial dressings of the deceased or last goodbyes. No wonder then that around 96% of the families we spoke to were unhappy that prayer, washing, dressing and perfuming of bodies were not part of the process.

It’s no surprise then that families started to hide the bodies of loved ones and bury them secretly. The consequence was that infection rates and deaths shot up.

The families we spoke to told us that the use of black bags and chlorine to wash corpses of their loved ones instead of shrouds were ‘disrespectful and undignified’. One bereaved parent told us how burial workers had “dropped the corpse of my late child on the ground as though it was a bag of cassava. I also saw corpses rolled with sticks; others tied on ropes and dragged on the ground. It was such a painful and sorrowful scene that no one would be happy to see and talk about.”

Another issue that was overlooked was the cultural taboo of men burying women. It wasn’t until our safe burial teams involved women and the wider family in the funerary process that we saw a shift in behaviour change.

Involving religious leaders made a huge difference to our Ebola emergency response. Interestingly 100 per cent of all bereaved families agreed that the involvement of religious leaders and women in the burial process was very important. The mobilization of priests and imams to spread prevention messages saw infection rates plummet. And in the month after the Safe and Dignified burials were introduced the highest number of deaths were reported since the outbreak started.

Ultimately, the culturally sensitive approach to the response was key to the containment of the Ebola outbreak in Sierra Leone. Wherever this virus strikes next, first responders must engage faith leaders, women and the wider community to stop Ebola in its tracks.