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Stories of Change

This section of our website highlights some of the Stories of Change that emerged from the research undertaken through the The 5S Foundation.
These stories here do not cover all aspects of the programme but highlight some of the changes that took place thanks to the advocacy and engagement work of the 5S Foundation public engagement activities across its three partner countries and a reflective piece written through the stories of the 5S PhD candidates in collaboration with the Institute of Development Studies.

Like other NTDs, mycetoma, podoconiosis and scabies are diseases strongly intertwined and shaped by issues of social justice, human rights and development. Their unacceptably high prevalence and persistence in highland tropical and sub-tropical areas of countries in Africa, Central and South America and South and South-East Asia is a clear indication of the poverty and vulnerabilities experienced by affected communities.

The elimination and control of these diseases requires multiple actions that go beyond the health sector, and this was an important element of the work undertaken by the public engagement teams in Ethiopia, Rwanda and Sudan.

Through the establishment of new connections and the formalisation of existing relationships and shared agendas – from the composition of technical working groups in federal ministries and the capacity building of researchers and journalists; through to the formation and support for local community associations – 5S Foundation’s research and evidence-based advocacy has provided a platform for efforts to translate growing awareness, understanding and commitment into actions to prevent these NTDs and improve the lives of the many people affected.

Advocacy to end neglect: promoting awareness to reduce stigma and mobilise action for people affected by podoconiosis in Rwanda

This Rwandan story of change focuses on the advocacy and capacity development work carried out in collaboration with stakeholders working at a national, regional and community level, to better understand the stigmatising nature of the conditions, and through this to advocate for services that take into consideration the challenges of stigma faced by patients and their families.

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Promoting multisectoral collaboration for tackling skin NTDs in Ethiopia

The Ethiopian story shares the 5S team’s collaboration across sectors to improve access to water, hygiene, and sanitation; their advocacy for education and prevention of the disease; and how by reducing social marginalisation and stigma through integrated advocacy campaigns patient well-being can be improved.

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Mobilisation of key stakeholders through an integrated research-public engagement approach in Sudan

This Sudanese story illustrates how the 5S team shifted the mindset of decision makers from a unilateral approach towards one that included knowledge exchange among multidisciplinary teams, including the perspectives from those affected by the condition.

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The Lived Experience of Doing Community Engagement and Involvement Work; Early Career Perspectives: “I took off the glasses and I’m looking wider”

In this fourth story, we hear directly from the 5S ECRs through facilitated conversations as they reflect on their involvement and learning from working in a Community Engagement and Involvement role and how their experiences shaped their understanding of their communities and their understanding of the disease treatment, process and the research process.

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