ECLIPSE introduced by our Early Career Researchers
The neglected tropical disease cutaneous leishmaniasis (CL) is caused by a parasite (Leishmania) which is spread through the bite of a sand fly. Infection results in disfiguring skin lesions which heal slowly and may cause disability, affect mental health and result in severe permanent scarring. 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.
CL is a highly stigmatising skin condition that leads to discrimination, social exclusion and poverty which, in turn, may lead to additional health problems. 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.
ECLIPSE is 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.
The three countries in which we work – Brazil, Ethiopia and Sri Lanka – offer three very different CL realities in terms of socio-economic, political and cultural factors.
Brazil (defined by OECD as an upper middle-income country) is the largest country in both South and Latin America. Portuguese is the official language and religion is a syncretic mix of Catholicism, Pentecostal Christianity and the Afro-Brazilian Candomblé religious tradition. CL has been endemic in Brazil for a long time. Because of this, public campaigns on identification of the disease and prevention measures have ensured that awareness is quite high in local communities. The ECLIPSE team is collaborating with a dedicated leishmaniasis centre, the Corte de Pedra Health Post, in the state of Bahia.
Ethiopia (defined by OECD as a low income country) is a multilingual nation in the Horn of Africa. The ECLIPSE team works in Tigray, the northernmost region in Ethiopia. The working language in this region is Tigrinya and almost 96% of the population are Orthodox Christians. While Ethiopia also has a long history of CL, there are no official numbers with regards to CL, as it is not mandatory to report CL in Ethiopia. Awareness of CL is very low. Community members have to travel very far to receive a CL diagnosis and treatment. This, coupled with the costs of treatment and missed work, mean that many people do not seek biomedical treatment and often turn to home remedies or traditional healers.
Sri Lanka (defined by OECD as a lower middle income country) is an island country in South Asia. The ECLIPSE team is working in the North Central Province where the local languages are Sinhala and Tamil, and almost 90% of the population is Buddhist. Sri Lanka offers a third different CL reality. Unlike in Brazil and Ethiopia, CL is new and represents and emerging public health issue. The first case was reported in 1992. In Sri Lanka, it is required to report CL cases, but given its relatively new presence, awareness among health professionals and the general population is quite low.
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 are using a range of qualitative and quantitative 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 via robust community engagement, to help design study documents, oversee ECLIPSE activities, and 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.