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.’

Abstract

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.

Caregiver burden in Buruli ulcer disease: Evidence from Ghana

“…Caregiver burden, defined in this study as ‘the extent to which caregivers perceive that caregiving has had an adverse effect on their emotional, social, financial, physical, and spiritual functioning [ 24 ], was prominent among caregivers of those affected by BUD in three districts in Ghana. We categorized the caregiver burden into four main themes: 1) Personal burden; 2) Impact on other family members; 3) Barriers to accessing care; 4) Support for caregivers.…”

“…The translated interviews were analysed via direct content analysis [ 31 ]. The data was first coded into broad themes by the study psychiatrist (JPO) based on a previous research [ 24 ]. The themes identified were support for caregivers, impact on care for other family members, direct burden on caregivers as well as barriers to healthcare.…”

“…Whereas caregiving can strengthen family ties, the role also demands committing significant amount of time and energy for long periods and performing tasks that may be physically, emotionally, financially, spiritually and socially daunting. The extent to which caregivers perceive these tasks as challenging can be termed ‘caregiver burden’[ 24 ]; these two definitions are maintained throughout the study. In a previous study, household cost of caregivers of BUD patients was 8.6 times higher than in those that socially isolated themselves from their BUD affected relatives [ 25 ].…”

“…A number of studies have documented the impact of caregiver burden on caregivers of patients with chronic skin NTDs namely podoconiosis [ 24 ], Lymphatic filariasis [ 26 ] and cutaneous leishmaniasis [ 27 , 28 ]. In addition, there has been one qualitative study of BUD caregivers to date, conducted in Benin [ 29 ].…”

With Bare Feet in the Soil: Podoconiosis, a Neglected Cause of Tropical Lymphoedema

“…In the case of chronic NTDs, particularly those causing disfigurement, the psychosocial impact is long-lasting [57, 58]. Furthermore, the psychological and emotional impact of the disease extends beyond the patient, to include family members and caregivers[59], as is the case for other skin-related NTDs such as leprosy and cutaneous leishmaniasis [60-62].…”