Research in Progress Seminar 

Monday 17 October 2022,  4-6.00pm (BST)

This is an in person event held at the RAI (details on how to get to us below),
please book your ticket here: https://www.eventbrite.co.uk/e/research-in-progress-addisu-tsegaye-tickets-432473849927 

This special Research in Progress event focuses on the lived experience of scabies among people living in refugee camps in Ethiopia and in Rwanda. Two PhD Fellows, Addisu Tsegaye and Dr Ursin Bayisenge, with the Social Sciences for Severe Stigmatising Skin Conditions (5S) Foundation programme who have recently completed fieldwork will share their research experiences and initial thoughts for discussion.

The seminar will be introduced by Dr Gem Aellah, Post-Doc Fellow with 5S (Brighton and Sussex Medical School, UK), with Prof Raymond Apthorpe as a discussant.

The individual talks will be followed by a broader discussion about the experiences of doing ethnographic research on three neglected tropical skin diseases (scabies, podoconiosis and mycetoma) with 5S researchers from Ethiopia, Rwanda, UK, and Sudan.

Understanding how precarity and marginalisation affect refugees’ vulnerability to, experiences of, and responses to scabies in Nguenyyiel Refugee Camp, Ethiopia

Speaker: Addisu Tsegaye, PhD Fellow with the Social Science for Stigmatising Skin Disease (5S) Foundation at Brighton and Sussex Medical School, UK, and lecturer in Sociology at Wollo University, Ethiopia. https://www.linkedin.com/in/addisu-tsegaye-15852963  

Lived experience of refugees affected with scabies: Case from Rwanda

Speaker: Dr Ursin BAYISENGE, PhD Fellow with the Social Science for Stigmatising Skin Disease (5S) Foundation at Brighton and Sussex Medical School, UK, https://www.linkedin.com/in/ursin-bayisenge-md-msc-2aa173125 @ursinbayiseng 

Individual Abstracts

1.  Understanding how precarity and marginalisation affect refugees’ vulnerability to, experiences of, and responses to scabies in Nguenyyiel Refugee Camp, Ethiopia

Scabies is a contagious skin-neglected tropical disease (skin-NTD) caused by the mite Sarcoptes scabiei. The disease is highly prevalent in tropical regions where poverty, limited access to healthcare, marginalisation and overcrowding contribute to unprecedented vulnerability and ineffective responses. In Ethiopia, scabies is common during man-made and natural catastrophes; thus, several large-scale outbreaks have occurred since 2013. This research project focused on the experiences of scabies among South Sudanese refugees in Nguenyyiel Refugee Camp in Ethiopia, drawing on theories of structure violence. It involved 40 participants recruited purposively from patients, caregivers, stakeholders, and community leaders. Qualitative methods including in-depth interviews, field observations and document analysis were employed to collect data. The analysis (ongoing) will be done through narrative analysis to allow study participants to construct stories and narratives based on their lived experiences.
The initial findings suggest that scabies is rampant in Nguenyyiel to the extent that it is one of the top five causes of illness for which people visit the health centre. However, the centre often falls short of the demand for scabicide. The problem is largely attributed to refugees’ adverse living conditions such as, overcrowding, lack of water sanitation and hygiene (WASH) facilities, unemployment, poverty, and sub-standard capacity of healthcare providers. Study participants view scabies in relation to poor personal hygiene, physical environment, and weak immunity. The research found mixed result on scabies stigma; for adults, scabies is not stigmatising because it is considered an inevitable structural problem that everyone can suffer from. For young people, however, it is a subject of shame and self-stigma as the disease is viewed in relation to poor hygiene, which defies the ideal expectation of being young. Despite scabies being a major health problem, a range of issues have undermined responses to the disease. Thus, community awareness, strengthening the capacity of healthcare service providers, and strong collaboration between the refugee administration and stakeholders are highly needed.

Key Words: Neglected tropical diseases, structural violence, ethnography, scabies, stigma, refugee, Nguenyyiel, Gambella, Ethiopia, narrative analysis

2.
Lived experience of refugees affected with scabies: Case from Rwanda

In this project, we explored deeply the experiences of living with scabies to understand and describe affected refugees’ beliefs about their condition and the impact of community discontent towards them. Qualitative research methods including in-depth interviews, life histories, key informant interviewees and focus group discussion were used to understand and interpret subjective feelings of refugees affected with scabies in their social-cultural context. All along, observation notes were taken. We conducted our study in a refugee camp setting where scabies is very prevalent due to overcrowding and poor living condition facilitating its spread. The initial findings aligned with structure violence, which is the theoretical framework for this study. Emerging themes include hopelessness, limited awareness about the origin of scabies, cultural beliefs about the cause of scabies and stigma at the individual and community level.

Background:
Addisu’s project is part of the Social Sciences for Severe Stigmatising Skin Conditions (5S) Foundation. The programme is a £3.5 million collaborative research partnership between the Department of Global Health and Infection at Brighton and Sussex Medical School; the Faculty of Geographical and Environmental Sciences at University of Khartoum; the Organisation for Social Science Research in Eastern and Southern Africa (OSSREA) based at Addis Ababa University in Ethiopia; the University of Rwanda; and the Institute of Development Studies (IDS).

The aims of the 5S programme are:

To examine the cultural logics and social and economic contexts of podoconiosis, mycetoma and scabies;
To understand the dynamics and dimensions of stigma;
To investigate how all three diseases have been conceptualised at national and international policy levels;
To evaluate existing interventions using social science perspectives;
To refine the conceptual framework developed to guide the Foundation’s research;
To develop a comprehensive intervention strategy for each disease;
To support endemic-country training posts (PhD and postdoctoral) in a manner that will leave enduring capacity for social science research;
To facilitate South-South and North-South sharing of best practice in research and advocacy applicable to a wide range of stigmatising conditions in low-resource settings.

More information about the programme and its overall vision can be found here:
https://www.bsms.ac.uk/research/global-health-and-infection/nihr-5s-foundation/nihr-5s-foundation.aspx 
Twitter: @5SFoundation

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