Title: Empowering people with Cutaneous Leishmaniasis: Intervention Programme to improve patient journey and reduce Stigma via community Education (ECLIPSE)
Funder: Department of Health and Social Care

Abstract: Cutaneous leishmaniasis (CL) represents a major public health burden for people in the poorest communities of many low and middle income countries (LMICs). CL is one of the most neglected of the neglected tropical diseases, both in terms of research investment and in health policies that improve patient outcomes. There are no vaccines or prophylactic drugs available for disease control and no current WHO targets to eliminate CL. We propose ECLIPSE: a transatlantic, cross-cultural applied healthcare programme underpinned by a syndemics conceptual framework, which aims to achieve a significant improvement in the physical and mental health outcomes of people with CL and to empower affected communities through increasing disease awareness and reducing stigma in Brazil, Ethiopia and Sri Lanka. The ECLIPSE programme has 6 overarching aims: 1) IMPROVE PATIENT OUTCOMES AND EMPOWER COMMUNITIES To co-develop, implement and evaluate two interventions (community education campaigns and training packages for healthcare workers) in each LMIC 2) FOSTER CROSS-CULTURAL LEARNING THROUGH ECLIPSE PARTNERSHIP To establish the transcontinental ECLIPSE consortium and carry out the 4-year applied health programme, which will enhance rapid international knowledge mobilisation 3) INFLUENCE HEALTH POLICY To recommend policy changes that address gaps in public health provision related to CL identified through the ECLIPSE research and influence implementation of these recommendations through the ECLIPSE Policy Network. 4) ACQUIRE NEW KNOWLEDGE ON CL To produce a comprehensive biopsychosocial model of CL embedded in the syndemics theoretical framework in three LMICs and to widely disseminate results and policy recommendations 5) DEVELOP SUSTAINABLE HEALTHCARE INTERVENTIONS To ensure sustainability of interventions through collaboration with a wide range of CL constituents (including patients, community stake holders, healthcare practitioners and policy makers) who have the ability and motivation to advocate for the routine implementation of ECLIPSE interventions and recommend new strategies in CL-endemic regions at national and international level. 6) APPLIED HEALTH AND CL RESEARCH CAPACITY BUILDING To establish a cohort of 18 Early Career Researchers and ensure their onward employability and retention through a robust interdisciplinary training and mentorship programme, in addition to enhancing leadership skills of senior ECLIPSE researchers to sustain the newly formed research groups These six aims will be achieved through six interlinked workpackages (WPs): WP1: Establish ECLIPSE research hubs (M1-12) 12 months WP2: Understanding local CL syndemics (M9-24) 16 months WP3: Developing and piloting ECLIPSE interventions (M16-30) 15 months WP4: Implementation of ECLIPSE interventions (M24-45) 21 months WP5: Process and impact evaluation (M4-48) 45 months WP6: Community and public involvement (M1-48) 48 months These WPs are underpinned by social scientific qualitative and quantitative methodologies, including ethnographic, creative and participatory methods collaborating closely with community members and key stakeholders through Communities of Practice and Community Advisory Groups. The ECLIPSE partnership has the potential to achieve significant impact on (1) the daily lives of people with CL in underserved areas, (2) the routine practices of healthcare professionals in CL-endemic regions, (3) the understanding of how policies and devolved governance affect health and wellbeing of local communities and (4) research investment in CL.

Lay abstract: The neglected tropical disease cutaneous leishmaniasis (CL) is caused by a parasite which is spread through the bite of a sand fly. Infection results in disfiguring skin lesions which heal slowly, cause disability, affect mental health and result in severe permanent scarring. CL is a highly stigmatising skin condition that leads to discrimination, social exclusion and poverty which, in turn, may lead to additional health problems. The most common treatment for CL consists of daily drug injections for 20 days, usually administered at specialist clinics located far away from rural communities. Treatment by traditional healers (e.g. burning lesions) or self-treatment (e.g. with household chemicals) is common, causing further scarring and possible long-term mental health effects. CL is found in 98 countries, each with different challenges in terms of disease awareness, early and accurate diagnosis, disease reporting and monitoring, available treatment pathways and access to healthcare. Early diagnosis and treatment improve patient outcomes by limiting lesion size and can reduce spread of the disease in the community. We propose ECLIPSE, a four-year healthcare programme which aims to improve the CL patient journey and reduce stigma in the most marginalised and underserved communities in Brazil, Ethiopia and Sri Lanka. ECLIPSE brings together expertise in an international, cross-cultural, multidisciplinary team that includes clinicians, anthropologists, psychologists, disease specialist and public health researchers. The ECLIPSE partnership includes established researchers, a cohort of early career researchers who will undertake ground-breaking research and the ECLIPSE Policy Network which brings together policy makers from the three countries to learn from best practice. We will use a range of methods to gain in-depth understanding of patients, communities and healthcare professionals experiences and views on the effects of CL on the daily lives of those affected, the barriers to seeking healthcare, obtaining accurate, early diagnosis and receiving effective treatment. The insights we gain will inform the development of new interventions: community education campaigns to increase disease awareness and reduce stigma and training packages for healthcare professionals. The interventions will first be tested, refined and then implemented in three field sites in each country. The research will benefit patients and communities in Brazil, Ethiopia and Sri Lanka by: Increasing early diagnosis and treatment uptake Helping patients improve their quality of life Empowering communities to reduce stigma and social isolation Ensuring community health workers are able to help CL patients We will involve local communities throughout this research to help design study documents, oversee ECLIPSE activities, advise on easily understandable messages to publicise findings to a wide public. ECLIPSE will disseminate results widely through academic and policy networks and to the wider public via exhibitions, project website and audio-visual documentaries. Our research will inform policy development for better global management of CL.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: SKIN;INFECTION