Case study: A community-centred approach to reduce stigma related to skin diseases
Cutaneous leishmaniasis is a disfiguring skin disease that affects people in more than 90 countries around the world. NIHR researchers have placed community engagement and involvement at the heart of their research, which is key to developing interventions that benefit and empower people with cutaneous leishmaniasis.
Tackling a stigmatising disease
Cutaneous leishmaniasis (CL) is a disease caused by a parasite that is spread through the bite of a sand fly. The infection causes skin lesions that heal slowly, resulting in severe permanent scarring and disability. As a result of the disfiguring lesions and scars, people with CL can experience discrimination, social exclusion, mental health problems and poverty, which, in turn, may lead to additional health problems.
CL is found in 98 countries around the world, each with different challenges in terms of disease awareness, early and accurate diagnosis, disease reporting and monitoring, available treatment pathways and access to healthcare.
WHO estimates that up to 40 million people suffer from the long-term, stigmatizing residual scarring associated with CL.
Professor Lisa Dikomitis, an anthropologist, and Dr Helen Price, a parasitologist, both at Keele University, are co-leading ECLIPSE: Empowering people with Cutaneous Leishmaniasis: Intervention Programme to improve patient journey and reduce Stigma via community Education. The UK team is working with teams at the Federal University of Bahia (Brazil) led by Professor Leny Trad and Dr Paulo Machado, at Mekelle University (Ethiopia) led by Professor Afework Mulugeta, and at Rajarata University of Sri Lanka, led by Professor Suneth Agampodi.
The study, a four-year £4.6m research project, is one of eight on epilepsy, infection-related cancer and severe stigmatising skin diseases in low and middle income countries, funded through the first call of NIHR’s Research and Innovation for Global Health Transformation (RIGHT) programme.
“We wanted to collaborate with researchers in countries with different experiences of cutaneous leishmaniasis. Brazil was an obvious one because the number of people with CL is very high there and the disease very well known,” says Dr Price.
“In Sri Lanka, CL has been there only for a short time, since the 1990s, so it is an emerging disease. There are opportunities to actually help with reducing the number of cases.
“And then Ethiopia in East Africa, where CL is believed to be common but it is very under-reported and not well studied from a social science perspective. Awareness of the disease is very low, both in the communities and amongst healthcare workers” she adds.
Engaging with communities throughout the project
The ECLIPSE team, spanning across three continents in Brazil, Ethiopia and Sri Lanka, has placed community engagement and involvement (CEI) at the heart of the ECLIPSE project right from the start to ensure a strong community focus.
If you don’t have CEI in this project, it cannot work. It runs throughout, the project starts and ends with CEI. ECLIPSE is not for the communities, it is with the communities.
Professor Lisa Dikomitis
A member from one of the ECLIPSE communities in Brazil said “I was expecting people [the research team] to come here wearing ties. When you hear ‘Salvador’ [the province’s capital city] and ‘university’, [you think of someone] […] with a straight posture and a way of being, a greater formality (…a postura, o modo de ser, aquela formalidade maior). But what I see are people [the ECLIPSE researchers] who came here and humanized us. People who reached out to us about a problem that we have, and therefore, we want to be part of finding a solution.”
The ECLIPSE study has four interlinked phases, including qualitative research to explore the experiences and perceptions of CL in the community; quantitative research to measure disease awareness; interventions aimed at raising awareness and reducing stigma, and training healthcare workers; and evaluation of CEI and ECLIPSE interventions.
Underpinning each of these phases is, of course, CEI. This means that each stage is conducted with people in communities affected by the cutaneous leishmaniasis.
Regular field visits were crucial to bring together key stakeholders in the local communities. ECLIPSE researchers set up several Community Advisory Groups (CAGs) in the three countries, which include people with CL and their family members, community health workers, traditional healers, religious leaders and representatives of key sectors and organisations. “Involving a wide range of community members and various stakeholders is essential to ensure input from a multitude of perspectives”, says Professor Dikomitis.
Discussions within CAGs take place at a municipal/village level and focus specifically on how research activities are to be implemented in local communities. Their meetings are ongoing, often involving creative and artistic methods of engagement to encourage wider participation.
At the regional level, the ECLIPSE team set up a Community of Practice in each country, which include clinicians, public health officials, religious and municipal leaders, non-governmental representatives, regional health officers, and people with CL. These Communities of Practice are responsible for influencing policy change, distributing findings, and raising awareness in the region and beyond.
Community knowledge to design context-specific interventions
ECLIPSE now counts over 60 team members, from a wide range of scientific disciplines, including anthropologists, parasitologists, clinicians, public health specialists, psychologists, artists and research administrators.
“So far research around CL has mainly been conducted by non-social scientists, but we are using social science methodologies to include the knowledge and experiences of the communities, in order to improve, and add to, the biomedical knowledge.
“We’re also training healthcare professionals, not in the ordinary sense, but about the local beliefs and behaviours, which are not part of the conventional medical curriculum and they might know only anecdotally,” says Professor Dikomitis.
The team also engages with the community members to better understand awareness of the disease, and inform on future ECLIPSE interventions.
We don’t know how aware people are about cutaneous leishmaniasis. We don’t know very well where community members seek care when they first have an infection. And that information is really important, it helps us improve the healthcare.
Dr Helen Price
A public official in Sri Lanka reported that it was thanks to ECLIPSE that he came to know about CL:
“It was only after you came to this village that I came to know that this disease has spread a lot. The Divisional Secretariat had made an awareness two years ago but it has not happened recently (Eththatama obathumanla gamata aapu welawe thamai maath danne mechchra durata meme rogaya pethirila thiyenawa kiyala)”.
Through ongoing high quality interdisciplinary research and community engagement activities, the team ensures that they’re sensitive to local communities’ needs, in the spirit of the focus of NIHR’s global health programme on supporting applied health research that addresses critical unmet needs.
“On all the methods that we’re using, we’re going back to the community to ask if it’s appropriate before we do it. For example, with the questionnaire about stigma and the impacts of CL, we’re asking the community whether the questions are appropriate, before we start doing the work”, says Dr Price.
With the communities' experiential input and community knowledge, combined with other knowledge such as biomedical and anthropological insights, the team will have a solid foundation to underpin the ECLIPSE interventions.
“In combining and respecting different types of knowledge, we aim to create interventions that will hopefully have a positive impact for the community. And the community itself will decide the format of the intervention, such as community street theatre, a phone application, a radio talkshow, etc” says Professor Dikomitis.
And community members part of the Community Advisory Groups are already recognising the positive impact:
“Your support for the sand fly disease is invaluable (Mul kalaye punchi getiththak enawa). There are many people […] who are being treated for the disease of the sand fly. In the early days, a small lump comes up. We don't care about that. Then it increases. Then we have to spend a lot of money on it. We don't count on this because we don't know. So, this is not felt by others. This attempt by you will save the government a lot of money (oba thumanla ganna me uthsahayen rajayata vishala mudalak ithiri wevi)” a community member in Sri Lanka said.