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

Abstract

BackgroundLymphatic 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.MethodsWe 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.FindingsLF 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.SignificanceThis 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.

Using kernel density estimates to investigate lymphatic filariasis in northeast Brazil

“…This municipality covers an area of 256 073 km 2 and is divided into 27 districts and 492 census tracts. The resident population was 581556 inhabitants (98% in the urban area), according to the 2000 demographic census.…”

“…1 Among the parasitoses in this group, lymphatic filariasis (LF) stands out because of its debilitating characteristics, the large number of individuals affected and, furthermore, the socioeconomic losses that it causes. 2 LF is endemic in 81 countries and affects approximately 120 million individuals. 2 In Brazil, it is caused solely by Wuchereria bancrofti.…”

“…2 LF is endemic in 81 countries and affects approximately 120 million individuals. 2 In Brazil, it is caused solely by Wuchereria bancrofti. It is estimated that 1 500 000 people live in areas at risk of LF and that 49 000 people are infected.…”

Diseases of Poverty: The Science of the Neglected

“…These issues have been raised time and again by researchers working across the areas of health and human rights, the social determinants of health (26) anthropology and sociology (27)(28)(29)(30)(31) to mention a few. At the very least increasing standards of living, provision of the basic human rights of food, shelter, and clothing are definitive interventions towards the elimination of diseases of poverty.…”

“…These are vulnerabilities that result from social and cultural norms of what is considered normal and who is an acceptable member of the community (28,36,37). The effects of these on health relate to values that are less tangible than disease; equity, opportunity, access -and require intervention at different levels.…”