Women’s participation in a disease management intervention for podoconiosis in northern Rwanda: understanding the context of women’s lives

Podoconiosis is a Neglected Tropical Disease which leads to foot and leg swelling (lymphoedema) and, ultimately, severe disability. People suffering from podoconiosis often cannot continue their economic or social roles for prolonged periods of time and experience stigmatisation. Research points towards women being more affected by podoconiosis and podoconiosis disease management interventions being less effective for women. Women’s participation in a podoconiosis disease management intervention in northern Rwanda was the focus of this study. The benefits women experienced when taking part in the intervention, and the challenges they faced when trying to follow intervention advice were explored. This study is based on a focused ethnography which applied several qualitative research methods, including in-depth and key informant interviews, focus group discussions, transect walks, and observations. Women’s experiences with participating in a disease management intervention for podoconiosis in northern Rwanda were analysed through the lens of structural violence. Our findings demonstrate that while the disease management intervention provided significant benefits to women suffering from podoconiosis, five, often intersecting, contextual domains made it difficult for them to participate optimally. These domains were - the cultural construction of podoconiosis, geographical conditions, personal situations, resource challenges, and intervention implementation limitations. Gender emerged as a cross-cutting factor across all these domains. Women’s precarious lives and power imbalances between the women and the intervention provider impacted women’s ability to optimally engage with the disease management intervention for podoconiosis. The context of women’s lives crucially impacted their ability to participate in a podoconiosis disease management intervention as intended. The differing needs and challenges of women affected by podoconiosis should be considered when designing and delivering health interventions to achieve more equitable health outcomes.