Social Sciences for Severe Stigmatising Skin Diseases (the 5-S Foundation).

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.