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Feet in yellow sandals showing Podo symptoms
Brighton & Sussex Medical School

NIHR 5S Foundation

BSMS > Research > Global health and Infection > NIHR 5S Foundation

NIHR 5S Foundation

The Social Sciences for Severe Stigmatising Skin Conditions (5S) Foundation at BSMS was established in 2019 and will run until August 2023. The programme is a £3.5 million collaborative research partnership between BSMS and the Mycetoma Research Centre in Sudan, 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 5S Foundation Logo

The 5S Foundation launched in 2019

Our vision is a Foundation that will end neglect of three conditions (podoconiosis, mycetoma and scabies) through bringing the social sciences to bear on these conditions in our DAC-listed partner countries. Podoconiosis is a progressive, debilitating form of leg swelling experienced by barefoot farmers, mycetoma a slow-growing, destructive infection of the skin and underlying tissues, and scabies an extremely itchy infectious condition caused by skin-burrowing mites. These conditions are huge public health problems in the three countries in which the 5S Foundation will work: Ethiopia, Sudan and Rwanda.

Social science research around NTDs is essential if key biomedical advances are to be successfully translated into elimination and control programmes, and our research will transform the health and wellbeing of people affected by these conditions by identifying interventions informed by social science perspectives at the level of the patient, the community and national and international policy. 

The aims of the programme are: 

  1. To examine the cultural logics and social and economic contexts of podoconiosis, mycetoma and scabies;
  2. To understand the dynamics and dimensions of stigma;
  3. To investigate how all three diseases have been conceptualised at national and international policy levels;
  4. To evaluate existing interventions using social science perspectives;
  5. To refine the conceptual framework developed to guide the Foundation’s research;
  6. To develop a comprehensive intervention strategy for each disease;
  7. To support endemic-country training posts (PhD and postdoctoral) in a manner that will leave enduring capacity for social science research;
  8. 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.

Follow the S5 Foundation on Twitter >

Profesor Getnet Tadele from 5S partner OSSREA explains: "Stigma has been one of the major challenges in controlling NTDs in Ethiopia. The worst part of having such conditions is that once people are identified with such diseases, it becomes their master status, the most salient public marker of affected people.  This conceals the true self of affected individuals and the skill they possess. The pain and physical abnormality of such conditions might be managed or improved, but the associated stigma doesn’t wither away, in fact it will continue to cast a long shadow on affected people's identity. Unfortunately, attempts to tackle stigma and its effect has not been fully successful and the 5S foundation is very timely and compelling project and will contribute to enhancing and changing behaviours, practices and policies that address stigmatisation."

Watch our video with Prof Gail Davey below to find out more about the 5S Foundation.

Framework

 

A flowchart illustrating the structure of the 5S Framework

Using a framework developed to guide research across the social sciences and fill the existing gaps, we have prioritised key areas of research. These include (at the level of the individual), deeper exploration of what it means to be affected by each disease, what affected people believe causes the condition and how the disapproval they face from their communities impacts their daily lives.

At the community level, we will investigate what is understood about the roles of environmental factors and social differences in causing disease and we will evaluate the effectiveness of some of the measures currently used to diminish stigma. These vary from school clubs and ‘coffee conversations’ to video clips on social media.

Finally, at national and global level, we will collate and analyse policies relevant to these conditions in each target country, and document how policies are shaped and decided upon.

Partners and collaborators

Logos of all the 5S partners next to a globe, with points marked in the UK, Sudan, Ethiopia, and Rwanda

Mycetoma Research Centre

The Mycetoma Research Centre (MRC) is a global leader in mycetoma management and research. The Centre was set up in 1991, at the University of Khartoum, and in 2015 was recognised as a WHO collaborating centre on mycetoma. The main aim of the centre is to increase the quality of life for mycetoma patients and generate evidence based developments in mycetoma care.

The centre recognises the importance of taking a multidisciplinary approach to mycetoma management, as holistic care includes medical, surgical and rehabilitative interventions. Community involvement is recognised as essential to improve care seeking behaviour and patient support, as most mycetoma patients reside in resource poor and remote rural access. Research, innovation and the transfer of knowledge form the cornerstone of the MRC practice.

more on Mycetoma Research Centre >

Contacts: 
Dr Sahar M Bakhiet, Project Manager - saharbakhiet@iend.org 
Professor Ahmed Hassan Fahal, Centre Leader - ahfahal@mycetoma.edu.sd 


University of Rwanda

The University of Rwanda strives to be a leading University that develops highly enterprising graduates prepared and dedicated to building a more just and sustainable society locally, nationally and globally, with appropriate innovations that advance quality of life. Their mission is to support the development of Rwanda by discovering and advancing knowledge, committed to the highest standards of academic excellence, where students are prepared for lives of service, leadership and solutions.

BSMS’s partnership with the University is channelled through Dr Jeannette Bayisenge, who is the Director for the Center for Gender Studies at the University. 

more on the Rwanda Centre for Gender Studies >

Contacts:
Dr Peter Mugume - jonmugume@gmail.com 


OSSREA

The Organization for Social Science Research in Eastern and Southern Africa (OSSREA) is a regional membership-based and donor-supported research and capacity-building organisation whose mission is to promote dialogue and interaction between researchers and policy-makers in Eastern and Southern Africa with a view to enhancing the impact of research on policy-making and development planning. It is based in Addis Ababa, Ethiopia. Membership is open to all individuals and institutions engaged in teaching and/or research. OSSREA not only engages in interdisciplinary research but also provides research grants to junior and senior scholars based in the region. OSSREA operates major projects either independently or in collaboration with other institutions and produces a variety of scholarly publications ranging from its bi-annual journal to monographs, books and research reports.

Read more about OSSREA >

Contacts:
Professor Getnet Tadele - getnett2001@yahoo.com 

 

IDS

The Institute of Development Studies (IDS) is a global research and learning organisation for equitable and sustainable change. In partnership with the University of Sussex, IDS is ranked first in the world for development studies by the QS University Rankings. IDS believe passionately that cutting-edge research, knowledge and mutual learning are crucial in shaping the transformations needed to reduce inequalities, accelerate sustainability and build more inclusive and secure societies. In line with our engaged excellence approach, we are committed to collaborating closely with local civil society, governments, international NGOs, citizens, donors, researchers and many others to realise this positive change. 

Contacts:
Tom Barker - Senior Health and Nutrition Convenor: t.barker@ids.ac.uk
Karine Gatellier – Nutrition Convenor: k.gatellier@ids.ac.uk