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Quantifying the socio-economic impact of leg lymphoedema on patient caregivers in a lymphatic filariasis and podoconiosis co-endemic district of Ethiopia

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Caprioli, Thais, Martindale, Sarah, Mengiste, Asrat, Assefa, Dereje, H/Kiros, Fikre, Tamiru, Mossie, Negussu, Nebiyu, Taylor, Mark ORCID: https://orcid.org/0000-0003-3396-9275, Betts, Hannah and Kelly-Hope, Louise ORCID: https://orcid.org/0000-0002-3330-7629 (2020) 'Quantifying the socio-economic impact of leg lymphoedema on patient caregivers in a lymphatic filariasis and podoconiosis co-endemic district of Ethiopia'. PLoS Neglected Tropical Diseases, Vol 14, Issue 3, e0008058.

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Abstract

Background
Lymphoedema caused by lymphatic filariasis (LF) or podoconiosis can result in physical dis-ability 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.

Item Type: Article
Subjects: WA Public Health > Health Problems of Special Population Groups > WA 395 Health in developing countries
WC Communicable Diseases > Tropical and Parasitic Diseases > WC 880 Filariasis and related conditions (General)
WY Nursing > WY 20.5 Research (General)
Faculty: Department: Biological Sciences > Department of Tropical Disease Biology
Digital Object Identifer (DOI): https://doi.org/10.1371/journal.pntd.0008058
Depositing User: Cathy Waldron
Date Deposited: 06 Mar 2020 11:37
Last Modified: 06 Mar 2020 12:22
URI: https://archive.lstmed.ac.uk/id/eprint/13893

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