“Agony of the Night” wins the film award at the annual Festival of the International Society for Neglected Tropical Diseases

The awarded documentary, created by independent Ethiopian filmmaker Eyerusalem Kassahun from the NIHR 5S Foundation, shares the stories of people in north-western Ethiopia affected by scabies and the health workers treating them.

Reacting to hearing that the film had won this award, Eyerusalem stated “I am delighted by this recognition, I am a firm believer in the power of film to disseminate health information and construct health-related narratives. Film is powerful because it allows people to see themselves and relate to ideas, which makes learning and change much easier. I am glad that the NIHR 5S foundation project recognizes this potential for achieving its objectives and I hope that other health-related projects will follow suit.

Dereje Wonde, a PhD researcher from BSMS and lecturer of sociology at Bahir Dar University in Ethiopia, has been doing ethnographic work to explore scabies incidence and management in rural communities, including among the religious students portrayed in the documentary. On receiving news of the award, he commented:

I found the documentary very important to increase the visibility of the 5S project and a powerful approach to sensitize and engage different stakeholders on scabies. The key message the film highlights is that the perpetuation of scabies in the community and the problem of re-infestation of the disease is inevitable because scabies is highly linked with the rural way of life. Tackling the problem requires influencing the living condition of people beyond medical provision.

Scabies is treatable, but hard to get rid of

Belsti, Merhatsedik and Hailemariam live in Gojjam, northwestern Ethiopia. They share a similar agony: at night, a constant itch that overwhelms them; in the day, widespread rashes and sores that lead them to be insulted and ignored by people around them.

Pictured here is Hailemariam Teka, taken from still in the documentary ‘The agony of the night’
Pictured here is Hailemariam Teka, taken from still in the documentary ‘The agony of the night’

Many people affected by scabies – a parasitic infestation caused by microscopic burrowing mites that lay eggs under the skin, triggering a host immune response that leads to intense itching and rashes – experience isolation and stigma.
Scabies spreads easily from person to person, mostly skin to skin and especially spreads among people who live close together.

Whilst scabies is defined by the World Health Organization as a Neglected Tropical Disease, it is estimated to affect over 200 million vulnerable populations around the world, including in nursing and residential care settings in the UK.

“Scabies is often thought of as a poor person’s disease and there is a lot of stigma for people that suffer with it, particularly when it is visible to others” describes Aderau Gete, a District Nurse who was interviewed for the film, “like the story of a student in year 12, when I asked him Why do you wear gloves? He said it is because the discrimination from other people was hurting him more than the disease. The terms used to describe people who experience scabies are highly derogatory. More than that, I feel ashamed of myself, I don’t want to play with my friends.”

The Social Sciences for Severe Stigmatising Skin Conditions (5S) Foundation project, a partnership between five institutions funded by the National Institute for Health and Care Research, has a strong element of community engagement and involvement, and actively supports research-based art forms to bring health-related findings to life. Understating the lived experience of people affected by neglected diseases such as scabies, to then inform more effective control, elimination and management programmes is one of the aims of the 5S Foundation.

Dereje explains, “In 2015-2016 Ethiopia experienced a series of scabies outbreaks due to the effects of climate change and drought. The lack of access to water and sanitation facilities exacerbates the conditions in which scabies thrives.

I see my role as a researcher is to facilitate people in narrating their experiences. And then making sense of what I am finding to help understand why and how certain populations are being particularly affected by the outbreaks, in this case, religious students in the Debre Elias district in Gojjam.”

A religious student in the Amhara region of Ethiopia shows his scabies scars

The 5S team are grateful to ISNTD for this recognition and celebrate their annual Festival that brings together communication, arts, entertainment and science to help complex public health messages reach patients, the public and global health professionals worldwide.

This project is funded by the NIHR (NIHR200140 5S Foundation, RIGHT Programme). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

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