Abstract
Evidence shows that podoconiosis, a Neglected Tropical Disease (NTD) leading to chronic foot and leg swelling, affects women significantly more than men in Rwanda, and that current disease management interventions for podoconiosis are less effective for women. However, not much is known about why this difference exists.My PhD research project aimed to understand women’s lived experiences with podoconiosis and their engagement with a podoconiosis disease management intervention in Burera District, northern Rwanda, through a structural violence and intersectionality lens. I conducted a focused ethnography and applied several qualitative research methods. My main research participants were 21 women affected by podoconiosis taking part in the disease management intervention.
My findings revealed that it took the women up to three decades of experiencing podoconiosis symptoms and seeking treatment before finally accessing the disease management intervention in Burera District. This was because none of the healthcare providers accessed were able to diagnose or adequately treat podoconiosis. However, despite the disease management intervention providing significant benefits, such as profound symptom and stigma reduction, and women being eager to take part in it, major challenges affected their regular engagement with the intervention. These major challenges could be summarised under five, often intersecting, contextual domains. Among these, geographical conditions, resource challenges, and intervention implementation flaws, emerged as the most challenging. The impact of podoconiosis on women’s lives differed depending on their age at illness onset and their socio-economic background. Depending on a woman’s life stage when developing podoconiosis and their access to the disease management intervention at this time, the intervention mitigated the illness’s impact on life-stage-related social and economic role fulfilment. Family support emerged as a crucial component not only in ensuring continuous engagement with the intervention and symptom improvement but also in ameliorating the economic impact of the illness. Women who had podoconiosis and their family members displayed interdependency through transactions of tangible and intangible support. However, not only women who had podoconiosis suffered from the impact of the chronic illness on their lives, but also their family members. Podoconiosis was thus not only an individual matter but led to the collective suffering of the whole family.
My research highlights how systems of structural as well as social oppression come together, especially in the intersection of gender, age, socio-economic background, rurality, and disability, and impact women’s lives, their treatment-seeking, and their engagement with a podoconiosis disease management intervention. Overall, my research adds to the growing body of evidence stressing the need for health interventions, and specifically interventions for NTDs, to uncover the context and everyday life experiences of women to sustainably and holistically improve health and well-being. My findings also underline the relevance of expanding the focus of health research and interventions from the affected individual to the family. The impact NTDs such as podoconiosis have on family members of affected people needs to be considered, as the whole family experiences collective suffering. Family members serving as informal caretakers of people suffering from NTDs need to be included in disease management intervention design and delivery and provided support as well.
| Date of Award | Jul 2024 |
|---|---|
| Original language | English |
| Awarding Institution |
|
| Supervisor | Papreen Nahar (Supervisor), Gemma Aellah (Supervisor) & Gail Davey (Supervisor) |