Community Engagement in Cutaneous Leishmaniasis Research in Brazil, Ethiopia, and Sri Lanka: A Decolonial Approach for Global Health.

Kay Polidano,Leny A B Trad,Thilini C Agampodi,Getachew R Tafere,Helen P Price,Suneth B Agampodi,Binega H Haileselassie,Zenawi Zerihun,Steffane Rodrigues,Lisa Dikomitis,Jayasundara M G Lalani,Linda Parton,Clarice Mota

doi:10.3389/fpubh.2022.823844

Abstract

Cutaneous leishmaniasis (CL) is a parasitic skin disease endemic in at least 88 countries where it presents an urgent, albeit often “neglected” public health problem. In this paper, we discuss our model of decolonial community engagement in the ECLIPSE global health research program, which aims to improve physical and mental health outcomes for people with CL. The ECLIPSE program has four interlinked phases and underpinning each of these phases is sustained and robust community engagement and involvement that guides and informs all activities in ECLIPSE. Our decolonial approach implies that the model for community engagement will be different in Brazil, Ethiopia and Sri Lanka. Indeed, we adopt a critical anthropological approach to engaging with community members and it is precisely this approach we evaluate in this paper. The data and material we draw on were collected through qualitative research methods during community engagement activities. We established 13 Community Advisory Groups (CAGs): in Brazil (n = 4), Ethiopia (n = 6), and Sri Lanka (n = 3). We identified four overarching themes during a thematic analysis of the data set: (1) Establishing community advisory groups, (2) CAG membership and community representation, (3) Culturally appropriate and context-bespoke engagement, and (4) Relationships between researchers and community members. During our first period of ECLIPSE community engagement, we have debunked myths (for instance about communities being “disempowered”), critiqued our own practices (changing approaches in bringing together CAG members) and celebrated successes (notably fruitful online engagement during a challenging COVID-19 pandemic context). Our evaluation revealed a gap between the exemplary community engagement frameworks available in the literature and the messy, everyday reality of working in communities. In the ECLIPSE program, we have translated ideal(istic) principles espoused by such community engagement guidance into the practical realities of “doing engagement” in low-resourced communities. Our community engagement was underpinned by such ideal principles, but adapted to local sociocultural contexts, working within certain funding and regulatory constraints imposed on researchers. We conclude with a set of lessons learned and recommendations for the conduct of decolonial community engagement in global health research.

Highlights

The global health decolonization movement is underpinned by a critical interrogation of what is regarded as “legitimate” in knowledge production [1,2,3]
We present here findings from our analysis of data collected in Brazil, Ethiopia, and Sri Lanka, between March 2020 and September 2021, the first of three evaluation points on the community engagement strategy in the 4-year ECLIPSE program
We illustrate each theme with examples from the ECLIPSE practice of community engagement through excerpts from field notes, ethnographic vignettes, descriptions of events, quotes from interviews, and photos

Summary

Introduction

The global health decolonization movement is underpinned by a critical interrogation of what is regarded as “legitimate” in knowledge production [1,2,3]. A colonialist legacy has led to a hegemonic knowledge hierarchy in which eurocentric, northern, and western perspectives are regarded as the primary legitimate knowledge base for global health research and interventions. This way of conducting global health research overlooks and undermines the values, views, and practices of the people living in the communities where the research is conducted. We argue that embedding meaningful community engagement in a global health project represents one avenue through which we can decolonize research practice and knowledge production. We draw on the example of community engagement in ECLIPSE (Empowering people with cutaneous leishmaniasis: Intervention programme to improve patient journey and reduce stigma via community education)—an interdisciplinary applied health program based in Brazil, Ethiopia, Sri Lanka, and the UK, which aims to improve physical and mental health outcomes for people with cutaneous leishmaniasis (CL).

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