The ECLIPSE team is strongly committed to involving community members in all the ECLIPSE activities in Brazil, Ethiopia and Sri Lanka. This means that each stage of our applied health programme is conducted with community members, in line with our ethos: ‘no research about us, without us’.
There is no widely agreed definition or approach to community engagement and involvement, but its main principles are captured in this definition by Nyirenda et al.(2018):
“A process of engaging potential participants and communities in a meaningful participatory process that involved them in an early and sustained manner in the design, development, implementation, design of the informed consent process, monitoring of research and in the dissemination of its results”.
Meaningful community engagement and involvement requires the identification of local stakeholders in each ECLIPSE community. Regular field visits by the ECLIPSE research teams were crucial to bring all key stakeholders together. While these stakeholders vary from one community to another, they typically include people with cutaneous leishmaniasis (CL) and their social network (family members, friends, neighbours), community health workers, traditional and spiritual healers, religious leaders and representatives of key sectors and organisations in the communities (for instance, education, transport, health, social work, farming).
Identifying a wide range of stakeholders is essential to ensure that ECLIPSE researchers lay the foundations for a robust collaboration, underpinned by multidirectional learning, and to receive input, perspectives and understandings on our project from a multitude of perspectives.
In ECLIPSE, we recognise, value and wish to amplify the community knowledge and understandings of health and illness, and the facilitators and challenges to seeking treatment for CL. This recognition places community engagement and involvement at the heart of ECLIPSE. The communities’ experiential knowledge, combined with other knowledge (such as biomedical and anthropological insights), will result in the co-creation of new knowledge which will underpin the ECLIPSE interventions.
We want to steer away from a one-size-fits-all model of community engagement. Team members from Brazil, Ethiopia and Sri Lanka are heavily involved in the design and planning of community activities to make sure that these are culturally appropriate and context bespoke. Therefore, community engagement looks different in each country. The objective is however the same: to collaborate with community members and treating them as our partners.
The ECLIPSE community engagement strategy is based on the establishment of two types of groups in each ECLIPSE country.
COMMUNITY ADVISORY GROUPS (CAGS)
The CAGs include people who live or work in the ECLIPSE communities. Discussions focus specifically on how research activities and interventions should be implemented in local communities. These CAGs are conducted at a municipal/village level. They include a wide and varied membership of community members, from whom we seek input and make joint decisions. ECLIPSE researchers are convening CAGs at regular intervals and where possible, using creative and participatory methods to engage with community members. We believe that this approach fosters an inclusive environment in our CAGs as people can participate and contribute to the meeting irrespective of their literacy skills or confidence levels to speak in group meetings.
COMMUNITIES OF PRACTICE (COPS)
ECLIPSE CoPs are groups convened at a regional level, targeting primarily stakeholders, ‘influencers’, who are able to bring about policy changes in the ECLIPSE region and beyond. The CoP members include clinicians, public health officials, religious and municipal leaders, NGO representatives, regional health officers and people with lived experience of CL. The aim of the CoP meetings is to discuss and develop strategies of how we could use our findings to promote change, in terms of policy and practice. The role of CoP members is to cascade ECLIPSE findings and ECLIPSE interventions upwards to policymakers at regional, national and international level.
To ensure that community members and other stakeholders involved in our advisory groups have a positive experience, we regularly monitor and evaluate our community-related activities, via a range of qualitative methods. The six core standards outlined in the UNICEF minimum standards for community engagement, which are underpinned by a human rights and community-based approach, guide our community engagement and involvement in ECLIPSE and its evaluation.