Title: Social Sciences for Severe Stigmatising Skin Diseases (the 5-S Foundation).
Funder: Department of Health and Social Care

Abstract: Background. This proposal focuses on the third area of unmet need and underinvestment identified in the RIGHT call: severe, stigmatising skin conditions. Our vision is a Foundation that will end neglect of three of these conditions (podoconiosis, mycetoma and scabies) through bringing the social sciences to bear on these conditions in our DAC-listed partner countries: Ethiopia, Sudan and Rwanda. 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. Specific Aims. 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 conceptualized 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. Methods. We have developed a conceptual framework, which combines ideas from Eco-Social Theory, the Framework Integrating Normative Influences on Stigma, and health policy and systems research. The 5-S Framework uses three levels of analysis, micro , meso and macro , broadly covering illness experience, health services and the political and policy arena. Data will be collected using a range of methods, including focused ethnography, life histories, key informant interviews, focus group discussions and document review. We will use grounded theory and phenomenological approaches as appropriate to the range of research questions. For research that includes patient, community or other stakeholder participants, ethical approval will be applied for from the National Ethical Review Committee of the country concerned and the Research Governance and Ethics Committee of Brighton & Sussex Medical School. Timelines for delivery. Year 1 will see contracts developed, recruitment of administrative and academic staff, registration of PhD students, proposal development and submissions for ethical review. In Years 2 and 3, the main fieldwork, transcription, translation and analysis will be done, at macro, meso and micro levels. Years 3 and 4 will focus on manuscript submission and development of an intervention strategy for each disease. Each year, there will be a Foundation meeting, an Early Career Researcher meeting, and a meeting of the Strategic Advisory Board. Anticipated impact and dissemination. Our ultimate impact aim is a change in discourse (in how the three diseases are conceptualised, addressed and represented) in our target countries. We will deliver our impact strategy through a combination of communication, dissemination, and public engagement activities. Our Strategic Advisory Board has been composed to enable opportunities for knowledge sharing and engagement, and will enhance sustainability by embedding the Foundation into organisations beyond the initial partnerships.

Lay abstract: In global health, interventions which may have a strong evidence base and appear straightforward to implement often encounter unexpected barriers in real life. Within the field of Neglected Tropical Diseases (a group of diseases arising from and contributing to poverty), a clear example is the low coverage of populations that would benefit from regular treatment to prevent disease ( Mass Drug Administration ). The gap between knowledge and practice is also large when behavioural changes are necessary &ndash; whether this is face-washing to prevent the eye disease trachoma or shoe-wearing to prevent podoconiosis (see below). If applied to these gaps, the social sciences (academic disciplines broadly concerned with human society), can often identify appropriate solutions. The Social Sciences for Severe Stigmatizing Skin Diseases (5-S) Foundation aims to fill these gaps around three diseases, podoconiosis, mycetoma and scabies, which attract unfair community disapproval ( stigma ). 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 5-S Foundation will work: Ethiopia, Sudan and Rwanda. Our Co-Applicants in each country will identify and recruit young scientists to join the 5-S Foundation training programme as doctoral or post-doctoral students. 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. Both the research conducted and the researchers themselves will represent the enduring legacy of the 5-S Foundation. The research will be participatory and include patients, affected community representatives, implementers and policy makers from the outset. Dissemination will include these groups and will extend to national governments and WHO through stakeholder engagement workshops.

Research activity codes: 8.3 POLICY, ETHICS AND RESEARCH GOVERNANCE
Health categories: SKIN;INFLAMMATORY AND IMMUNE SYSTEM