Caprioli, Thais, Martindale, Sarah, Mengiste, Asrat, Assefa, Dereje, H/Kiros, Fikre, Tamiru, Mossie, Negussu, Nebiyu, Taylor, Mark, Betts, Hannah, and Kelly-Hope, Louise A.
Background: Lymphoedema caused by lymphatic filariasis (LF) or podoconiosis can result in physical disability and social exclusion, which is exacerbated by painful acute dermatolymphangioadenitis (ADLA) episodes. These conditions have a significant impact on patients, however, little is known about the indirect effects on their caregivers. This study, therefore, aimed to determine the impact on caregivers for patients with leg lymphoedema in a co-endemic district of Ethiopia. Methodology/Principal findings: A cross-sectional survey of lymphoedema patients and their caregivers was conducted using semi-structured questionnaires in the Southern Nation Nationalities Peoples Region (SNNPR) of Ethiopia. Lymphoedema patient information on clinical severity (mild, moderate, severe), frequency of ADLAs, their socio-demographic characteristics and the identity of main caregiver(s) was collected. Caregiver information on socio-demographic characteristics, types of care provided, their quality of life (QoL) measured across nine domains, and productivity was collected, with key indicators compared in the presence and absence of patients' ADLAs. A total of 73 patients and 76 caregivers were included. Patients were grouped by mild/moderate (n = 42, 57.5%) or severe (n = 31, 42.5%) lymphoedema, and reported an average of 6.1 (CI± 2.18) and 9.8 (CI± 3.17) ADLAs respectively in the last six months. A total of 48 (65.8%) female and 25 (34.2%) male patients were interviewed. Caregivers were predominately male (n = 45, 59.2%), and spouses formed the largest caregiving group for both female and male patients. In the absence of an ADLA, most caregivers (n = 42, 55.2%) did not provide care, but only one caregiver did not provide care during an ADLA. In the absence of an ADLA, the average time (hour:minute) spent by mild/moderate (00:17, CI: ± 00:08) and severe (00:10, CI: ± 00:07) patient caregiver per task was minimal. The time mild/moderate (00:47, CI: ± 00:11) and severe (00:51, CI: ± 00:16) patient caregivers spent per task significantly increased in the presence of an ADLA. In addition, caregivers' QoL was negatively impacted when patients experienced an ALDA, and they had to forfeit an average of 6 to 7 work/school days per month. Conclusion/Significance: Lymphoedema and ADLAs impact negatively on patients' and their caregivers' lives. This emphasises the importance of increasing access to effective morbidity management and disability prevention services to reduce the burden and help to address the Sustainable Development Goal (SDG) 5, target 5.4, which seeks to recognise and value unpaid care and domestic work. Author summary: Lymphatic filariasis and podoconiosis can result in chronic severe lymphoedema of the limbs, which is aggravated by frequent painful episodes of acute bacterial infection known as 'acute attacks'. The debilitating impact of these conditions on patients are well documented, however, the extent to which the hardship extends to their caregivers is unknown. To address this knowledge gap, a survey of 73 lymphoedema patients and their caregivers was conducted in an endemic region of Ethiopia. Patients were found to be predominately female and caregivers predominately male, mostly spouses. Caregivers provided a wide range of care, and the type, frequency and time spent on tasks significantly increased when patients experienced an acute attack. Caregivers reported a negative impact on their quality of life and provided care for an average of 15 days and forfeited an average of 7 days of work or school per month. This study has revealed a previously hidden burden of lymphoedema that not only affects patients, but their caregivers who are mostly family members. This emphasises the importance of increasing access to effective morbidity management and disability prevention programmes to reduce the burden and help to address the Sustainable Development Goal (SDG) 5, target 5.4, which seeks to recognise and value unpaid and domestic work. [ABSTRACT FROM AUTHOR]