The 5S Foundation Ethiopia, drawing from their wider experience of working in diverse development sectors and guided by the 5S Foundation conceptual framework, recognised early on the importance of fostering partnerships and building alliances with a wide range of stakeholders to actively promote multisectoral collaboration to address the broader causes and social effects of podoconiosis and scabies, as part of an enabling environment for action.
What changes took place?
Early and sustained engagement with a range of multisectoral actors enabled the team to strategically position the 5S Foundation project as a unique source of social science-driven knowledge and expertise in the context of tackling skin NTDs in Ethiopia.
Membership of the WASH-NTD technical working group, convened by Ethiopia’s Federal Ministry of Health, facilitated 5S Ethiopia’s contribution to national level coordination and collaboration with key government officials and implementing partners and gave the team a platform to highlight how social science research can inform the design and operationalisation of NTDs interventions. This positioned the team well to provide feedback to the primary evaluation of Ethiopia’s second NTD master plan and inform the third.
Through this membership, 5S Ethiopia members worked with Ministry of Health officials to improve societal understandings of skin NTDs and promote the reduction of stigma and discrimination through co-designed social science knowledge-informed messages targeted at endemic communities, health workers and the wider public. The messaging was incorporated into health information resources, including posters distributed to community members via the 5S Foundation’s communities of practice, regional health bureau, schools, local administration and woreda (district) health officials in the Amhara region.
This was further advance by key strategic positions held by the Co-Investigator of the 5S OSSREA team which uniquely positioned him to advocate for the integration of social science. Acting as both a member of the NTD Research Advisory Committee to the Ministry of Health (MOH) and in being appointed as a national NTD Champion, Professor Tadele was able to drive and influence the inclusion of social science perspectives. This was achieved in several ways, for example in his capacity of research advisor, he was able to ensure that social science abstracts received appropriate attention and then as an invited key note speaker and panellist at national NTD symposiums for consecutive years and through drafting a Call to Action focussed on highlighting the structural aspects of NTDs at World NTD day events, he was able to bring the spotlight on the importance in addressing social science issues, such as political commitment and domestic resource mobilisation) to key national decision makers,
A Memorandum of Understanding between the Ethiopian Society of Sociologists, Social Workers and Anthropologists (ESSSWA) and 5S Ethiopia promoted cooperation between both organisations to deliver training and capacity building for ESSSWA members with the objective of expanding national social science research capabilities, including improved understanding of social determinants and the effects of ill health.
This included collaborating with the Federal Ministry of Education to host a four-day training of trainers on research ethics and writing for academic publication. The training brought together twenty-eight professionals from ten ESSSWA regional chapter universities, ESSSWA’s Institutional Review Board (IRB) members, and the 5S team.
Establishing relationships with key governmental and non-governmental actors has enabled the 5S Ethiopia team to reach key senior decision makers, including Ethiopia’s Director of Disease Prevention and Control and senior representatives from international partners such as Unlimit Health (previously SCI Foundation) and the Bill and Melinda Gates Foundation with new and emerging insights from the project’s research and engagement activities. This has included the presentation and dissemination of short films on podoconiosis and scabies and the subsequent adoption of some of these products in engagement activities. For example, the National Podoconiosis Action Network (NaPAN) used these products to build awareness of these stigmatising conditions amongst the many communities that NaPAN serves.
In recognizing the value of integrating social science insights into their advocacy efforts, NaPAN, in collaboration with 5S, initiated a significant shift in their approach. Consequently, NaPAN have not only begun to partner with researchers to advocate for NTDs but have also hosted joint training sessions: demonstrating the strategic and practical value of a multi-disciplinary approach.
How did the 5S Foundation engage?
From project inception, the 5S Ethiopia team sought to forge relationships and promote buy-in to the aims and objectives of the project with key stakeholders. Actors included representatives of different technical units within the Federal Ministry of Health, domestic and international non-governmental organisations, professional bodies, academia, and media (Ethiopian News Agency, Amhara media corporation, ETV).
An introductory convening of multiple actors in January 2021 led to a series of bilateral follow-on interactions to discuss ideas in greater depth, build trust and understanding, and identify joint actions. This process led to a series of meaningful partnerships between the 5S Foundation and several organisations and networks working directly on skin NTDs or indirectly in other development sectors.
Federal Government of Ethiopia
5S Ethiopia’s engagement with officials working on NTDs within Ethiopia’s Federal Ministry of Health, including the National Social Behavioural Change and WASH-NTDs expert, led to a collaborative agreement centred on strengthening the contribution of social science research to address skin NTDs stigma and neglect. 5S Ethiopia were invited to join the WASH-NTD technical working group and ensured that Ethiopia’s National NTD Programme Team Leader joined the international advisory board of the 5S Foundation project.
The collaborative agreement saw 5S Ethiopia members work with Ministry of Health officials to improve understanding about skin NTDs and promote the reduction of stigma and discrimination through the co-design of messages informed by social science knowledge and targeted at endemic communities, health workers and the wider public.
With members of the WASH-NTD and lymphatic filariasis and podoconiosis technical working groups, 5S Ethiopia co-hosted a joint consultative workshop to explore synergies between objectives and activities, and how to leverage knowledge from the 5S Foundation for tackling skin NTDs in Ethiopia, with a particular focus on stigma and discrimination.
The co-design of an awareness campaign by 5S Ethiopia and the Federal Ministry of Health, using posters, was a significant step in increasing knowledge about neglected tropical diseases (NTDs), their prevention, and available treatment options. These posters, featuring various key messages, were distributed to communities through Partners in Education, NaPAN, and regional NTD focal points.
Anteneh Mekonnen, Social and Behaviour Change & WASH expert for NTDs at the Federal Ministry of Health commented:
“The 5S project’s input into the WASH-NTD technical working group contributed to multi-sectoral coordination to accelerate elimination of NTDs. And at macro level, it provided feedback on NTD policy and guidelines to coordinate and integrate across sectors.”
National networks
In partnership with NaPAN – a membership network that works to coordinate, build capacity, and facilitate learning between organisations that implement interventions to control and eliminate podoconiosis and other skin NTDs in Ethiopia – joint activities, including policy dialogues, community awareness campaigns, tools to support woreda (district) WASH-NTDs taskforces, and support and training to expert patients were developed. In July 2022, NaPAN, 5S Ethiopia, and Ethiopia’s Ministry of Health jointly organised a policy advocacy workshop to discuss the need for a multi-sectoral approach to tackling podoconiosis and scabies, including their stigmatising nature.
5S Ethiopia is collaborating with the Consortium of Christian Development and Relief Associations (CCDRA) via their health forum. CCDRA is a consortium of non-governmental and civil society organisations working in a variety of development sectors, including agricultural development and food security, rural and urban development, HIV/AIDS prevention and control, environmental protection and gender mainstreaming. Following a presentation by the 5S Ethiopia Principal Investigator to the CCRDA health forum general assembly a CCRDA NTD working group was established with backing from the Ministry of Health.
The 5S team also engaged with Partners in Education Ethiopia (PiEE) to strategically use their outreach programmes in schools to raise awareness about skin conditions. Students played a critical role in disseminating information to parents and the larger communities quickly and at almost no cost using innovative approaches. Between February 2023 and August 2024, 5,510 teachers and students were directly engaged in five target schools. And around 96,000 community members were reached through the project’s awareness raising materials, presentations and media.
An initial survey was carried out the five target schools and surrounding communities in Gimjabet, Debrework, and Azena to establish knowledge and attitudes toward the skin conditions. At the end of the project the same communities were revisited, and a monthly reporting system was used to monitor awareness levels, stigma reduction and treatment seeking behaviours and there was a noticeable reduction in stigma associated with these diseases. Community members began to view podoconiosis and scabies as treatable conditions rather than signs of personal failure or curses. At Azena primary school the principal strongly asserted that the number of students who had been suffering from scabies has decreased, and it was now uncommon to see any student in the school with this skin condition.
PiEE targeted interventions according to the results from the baseline survey in each community and school setting. Activities included familiarization workshops, capacity training for students and health extension workers (forty in total) to reach the out of school community, the development and distribution of brochures (50,000), flyers and billboards in both Amharic and Awigne languages to ensure accessibility for all, parents’ forums using poems, drama and dialogues to disseminate information about the diseases. They also worked with the woreda health bureaus to integrate these messages into their existing responsibilities.
Zemenay Habtemariam, a student at Professor Getnet Secondary School in Azena, Ethiopia., was selected as a mini-media club member and trained to deliver messages across various media. She says:
“The training was about the skin diseases—podoconiosis, scabies, and lymphatic filariasis and delivering the message through various media like plays, poems, chanting… although I could recognize podo and scabies I had no idea about their real cause, or methods of prevention and stigma against those who were infected, before joining in the training. I now know all the essentials about these. I have also been trained on how best to deliver the message.”
The final report from PiEE can be found below:
Regional actors
At a sub-national level, 5S Ethiopia worked with local stakeholders within the regions where research would be undertaken. This has also been a crucial step in understanding and addressing the contextual challenges within each regional setting and enable meaningful changes for people living with NTDs within these areas. Workshops and trainings were organised in partnership with key regional actors, for example, in Amhara, working with the Amhara National Regional State NTD programme, the Amhara Regional Health Bureau NTDs team, and the Amhara Public Health Institute and in Gambella in collaboration with Refugees and Returnees Service (RRS) Gambella Branch and Gabella Regional Health Bureau and in Jimma, Oromia, in partnership with the Oromia Health Bureau. Through working closely with regional actors this has helped inform implementing strategies and bring their work closer to affected populations and service providers.
These local institutions have been integral to the 5S Foundation’s work through their support for research and public engagement activities at local levels and helping team members to deepen their understanding of communities’ circumstances, experiences, and needs. Tailored training for primary and community health practitioners has strengthened the local health system’s capacity to treat and care for people affected by the two skin NTDs.
This story was written collaboratively with input from Tom Barker, Emnet Debela, Esther Garibay, Getnet Tadele, Alemu Tesfaye, Jenni Wilburn, Garedew Yilma.
