In this blog, Alemu Tesfaye, 5S Foundation Public Engagement Officer, reflects on the vital role of community engagement in Neglected Tropical Disease Control.
Introduction
Neglected Tropical Diseases (NTDs) affect over 1 billion people worldwide and are often associated with poverty and stigma, leading to discrimination and exclusion. To address this, it is important to bring together individuals affected by NTDs and other stakeholders in a supportive and inclusive environment. One mechanism among many others is a community of practice. The 5S Foundation Ethiopia project established a Community of Practice (CoP) platform that offers valuable information and insights on podoconiosis, an NTD that causes swelling of the lower legs, and provides a supportive space for individuals affected by the disease to connect, share experiences, and work towards effective and culturally appropriate interventions.
with lived experience of podoconiosis.
A CoP can contribute to combating NTD stigma by:
- Providing accurate and up-to-date information and dispelling myths and misconceptions surrounding these diseases.
- Building the capacity of individuals affected by NTDs by offering training and resources for disease management, advocacy, and community mobilization.
- Helping individuals and communities to better understand and manage NTDs, and empowering them to advocate for their own health and well-being.
Witnessing the impact of a Community of Practice
During a recent update from the Shime Kebele CoP in South Gondar, established under the 5S Foundation project in the Amhara region, I was impressed by the positive impact of the CoP on its members. The CoP, is comprised of diverse members from the community including health workers, local authorities, individuals living with podoconiosis, clergy, school leaders, and representatives of community structures like women and youth.
The CoP members were able to connect with others who have similar experiences, which was not the case previously, and they are able to exchange information and resources and collaborate to tackle the challenges they face. With the help of local authorities and NGOs, the members of the CoP were able to provide assistance including the provision of buckets, soap and education on how to care for their legs to individuals affected by podoconiosis. Through their efforts, they were able to combat neglect and stigma surrounding the disease and raise greater awareness.
During another visit to establish a CoP in the Amhara region, I saw the considerable disparities in knowledge about podoconiosis among health workers and the insufficient capacity of local health centres to manage the disease compared to the other site. This could be due to the unequal distribution of resources and activities by NGOs. This highlights the importance of the CoP in educating its diverse members, including local government and healthcare professionals, to raise awareness and promote effective interventions. By doing so, the CoP ensures ownership and sustainability of efforts to combat podoconiosis and its related challenges.
Empowering Individuals and Communities
By empowering individuals affected by NTDs to advocate for their own needs and those of their communities, a CoP can contribute its fair share to break the cycle of neglect and stigma associated with NTDs, leading to more equitable and effective health outcomes. During an update from the leaders of the Shime Kebele CoP, I learned that the empowerment of individuals affected by podoconiosis through engagement with local community leaders and the support they received to enhance their advocacy skills and boost their self-confidence. This enabled them to effectively communicate their concerns and priorities to decision-makers and other stakeholders in their community.
For example, local community leaders were engaged in a discussion with two individuals who were members of the Shime Kebele CoP and had been affected by podoconiosis. These individuals shared their personal stories, highlighting the challenges they faced and the stigma they experienced due to the disease. This exchange helped them gain the support of other community members, boosting their confidence to speak publicly about the issue at the health facility. By raising awareness about the impact of podoconiosis, these individuals were able to effectively communicate their concerns and priorities to decision-makers and other stakeholders in their community.
Due to these interactions, the local authorities collaborated with other members of the CoP to organize a community event that brought together sixty individuals affected by podoconiosis. At this event, the participants shared personal stories and statistics regarding the disease’s prevalence in their community. This exchange of information made the local leaders more knowledgeable and committed to finding solutions to address the issue. Consequently, the CoP persuaded the local leaders to conduct monthly meetings with individuals affected by podoconiosis, creating an ongoing dialogue platform for them to share their experiences, concerns, and ideas on how to prevent and manage the disease in their community.
Conclusion
In conclusion, a Community of Practice is a powerful tool for promoting awareness, understanding, and effective interventions for NTDs while also empowering individuals and communities affected by these diseases. Through collective action and advocacy, a CoP can break the cycle of neglect and stigma and lead to greater investment and attention to NTD control. The 5S Foundation is committed to supporting the CoPs established in the Amhara region and ensuring their sustainability by making sure that the COPs use existing structures and decision-making channels.
