The impact of acute adenolymphangitis in podoconiosis on caregivers: A case study in Wayu Tuka woreda, Oromia, Western Ethiopia. ‘If she was healthy, I would be free.’

Background: Podoconiosis, also known as mossy foot or endemic non-filarial elephantiasis, is a preventable form of lower-leg lymphoedema caused by prolonged (typically barefoot) exposure to soil derived from volcanic rocks. Acute adenolymphangitis (also called ‘acute attack’) is a serious complication of podoconiosis resulting in significant symptoms and worsening disability. Despite the well-known morbidity associated with podoconiosis, to date there have been no studies looking at the impact, or burden, of podoconiosis on caregivers. This study explored the experiences and impact of acute attacks on the caregivers of those with podoconiosis in one endemic district of Ethiopia. Methods/Principal findings: This qualitative study was based in Wayu Tuka woreda (district), Oromia, Western Ethiopia. 27 semi-structured interviews of those with podoconiosis and their caregivers were conducted in June 2018. Here we report the findings from the caregiver’s interviews. Data were analysed using NVivo 12. Directed content analysis, a qualitative approach related to thematic analysis, was used to analyse the results. This study highlights a previously unreported impact of acute attacks on the caregivers of those affected by podoconiosis. The findings demonstrate the significant social and financial pressures placed on podoconiosis-affected families which are exacerbated during acute attacks. This study also highlighted the emotional burden experienced by caregivers, the range of care activities placed on them and the limited support available. Conclusions: This study found a significant impact on the caregivers of those with podoconiosis, especially during acute attacks, in Wayu Tuka woreda. It also highlighted the limited support available to caregivers. Further research is needed to understand whether this impact applies to podoconiosis caregivers across Ethiopia, and beyond, and to establish if there are wider implications of this important consequence of podoconiosis, for example on the economy and caregivers’ mental and physical health. Author summary: Podoconiosis is a foot condition, common in the highlands of Ethiopia, caused by exposure to volcanic soil. It can be prevented by wearing shoes and adhering to foot hygiene practices. Podoconiosis causes swelling of the lower legs and is a disabling and stigmatised condition. It is made worse by ‘acute attacks’, during which the leg becomes painful, swollen and red. Often the person affected cannot work and is bedbound during these episodes. This study identified a previously unreported burden on the caregivers of those with podoconiosis during acute attacks in one endemic district of rural Ethiopia. Specifically, we identified a significant social and financial pressure placed on podoconiosis-affected families in meeting healthcare costs, covering daily expenses such as children’s education costs and progressing within their communities. This study also highlighted the emotional burden experienced by caregivers, the range of care activities placed on caregivers and the limited support available. These findings warrant further research in other contexts but highlight an important wider social consequence of podoconiosis.