Neglected Patients with a Neglected Disease? A Qualitative Study of Lymphatic Filariasis

23 Oct 2007

Maria Victoria Valero

Source: PLoS Neglected Tropical Diseases (see original article or PDF)

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Citation: Perera M, Whitehead M, Molyneux D, Weerasooriya M, Gunatilleke G (2007) Neglected Patients with a Neglected Disease? A Qualitative Study of Lymphatic Filariasis. PLoS Neglected Tropical Diseases Nov 21;1(2):e128. doi: 10.1371/journal.pntd.0000128

This paper reports qualitative research on socio-cultural factors associated with filariasis. The authors discuss possible interventions and public policies to alleviate the social and economic impact associated with this neglected disease. The study was conducted among 60 participants from three villages in Matara District, Sri Lanka. Primary information was obtained through in-depth interviews concerning experiences and consequences of the disease.

The results provide strong evidence that the disease is associated with poor living conditions. Also, as a result of low incomes, the infected population is not able to reduce their exposure or to get prompt and early diagnosis. Their illness affects also the family situation, due to disability and low household income.

From the public health point of view, filariasis represents a big challenge for health systems and the affected population. Firstly, health institutions often exclude the planning, monitoring and evaluation of these kinds of pathologies, due to human and financial constraints. Secondly, this disease causes a long lasting disability and there are limited models for preventive action. Thirdly, patients are highly stigmatized; hence access to services is difficult within public health services and paying for services is often not possible owing to poverty. These factors and their interplay contribute strongly to the persistence of filariasis and other neglected diseases with similar risk factors and patterns (1).

To understand tropical disease problems and their control, combined methodologies are needed. Quantitative methods offer the possibility of characterizing the magnitude, frequency and distribution of diseases using large sample sizes. However, qualitative methods allow the collection of more detailed information at the individual and household level, particularly as regards the patterns of vulnerability and resilience linked to the social and cultural conditions that determine tropical disease problems. Consequently, combining the approaches leads to an effective amalgamation that allows defining and tailoring preventive and curative control approaches to the respective epidemiological settings.

Reference

1. Molyneux DH (2004). Neglected diseases but unrecognised successes-challenges and opportunities for infectious diseases control. Lancet 364: 380–383.

© 2007 Perera et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Source

Title:
Neglected patients with a neglected disease? A qualitative study of lymphatic filariasis.

Authors:
Perera M, Whitehead M, Molyneux D, Weerasooriya M, Gunatilleke G

References:
PLoS Negl Trop Dis 2007: Vol. 1 no. 2, pp. e128

Abstract:
Lymphatic filariasis (LF) is a so-called neglected tropical disease, currently overshadowed by higher-profile efforts to address malaria, tuberculosis, and HIV/AIDS. Despite recent successes in arresting transmission, some 40 million people who already have the disease have been largely neglected. This study aims to increase understanding of how this vulnerable, neglected group can be helped.We used purposive sampling to select 60 men and women with filarial lymphoedema (45 with filarial elephantiasis and 15 men with filarial hydrocoele) from the south of Sri Lanka in 2004-2005. Participants were selected to give a balance of men and women and poor and nonpoor, and a range of stages of the disease. Participants' experiences and the consequences of their disease for the household were explored with in-depth qualitative, semistructured interviews.LF was extremely debilitating to participants over long periods of time. The stigma attached to the condition caused social isolation and emotional distress, and delayed diagnosis and treatment, resulting in undue advancement of the disease. Free treatment services at government clinics were avoided because the participants' condition would be identifiable in public. Loss of income due to the condition was reported by all households in the sample, not just the poorest. Households that were already on low incomes were pushed into near destitution, from which it was almost impossible to escape. Affected members of low-income households also had less opportunity to obtain appropriate treatment from distant clinics, and had living and working conditions that made hygiene and compliance difficult.This highly vulnerable category of patients has low visibility, thus becoming marginalized and forgotten. With an estimated 300,000 total cases of elephantiasis and/or oedema in Sri Lanka, and around 300,000 men with filarial hydrocoele, the affected households will need help and support for many years to come. These individuals should be specially targeted for identification, outreach, and care. The global strategy for elimination is aimed at the cessation of transmission, but there will remain some 40 million individuals with clinical manifestations whose needs and problems are illustrated in this study.

PMID: 18060080
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