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

Date Published: November 21, 2007

Publisher: Public Library of Science

Author(s): Myrtle Perera, Margaret Whitehead, David Molyneux, Mirani Weerasooriya, Godfrey Gunatilleke, Mitchell Weiss

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.

Partial Text: Recently, the profile of the “neglected diseases” [1],[2] has been enhanced by a renewed interest by policymakers, including the new Director-General of the World Health Organization (WHO). These diseases cause long-term morbidity, rather than high mortality, but have been overshadowed by higher-profile efforts to address malaria, tuberculosis, and HIV/AIDS [2]. Recent studies show extensive and underestimated morbidity for the neglected diseases [3], totalling around 56 million cumulative disability-adjusted life years, which is more than for malaria and tuberculosis [4]. Lymphatic filariasis (LF) is one of these diseases and one of the leading causes of disability, infecting some 120 million individuals, with a further 1.3 billion people at risk [5].

Participants’ poverty and associated way of life severely limited their ability to prevent or cope effectively with the condition at all stages of the disease and its treatment. At the infection stage, for instance, poorer participants reported having to work for long hours in contact with stagnant water, with daily exposure to mosquito breeding places. Two common occupations for poor women—making coir yarn and weaving thatch—involved soaking materials in stagnant pits. Often the women had to stand chest-high in them for hours. These pits were generally sited adjacent to homes and were breeding places for Culex quinquefasciatus, the vector of W. bancrofti. The ability of patients to adopt preventive measures in the home was also severely limited. The poor could not afford the costs involved in avoiding exposure to mosquitoes, such as mosquito netting and repellent, and did not have the types of houses that would keep out mosquitoes.

More advanced stages of the disease were present among both poor and non-poor participants, but there were marked differences in the opportunities for participants from different types of household to manage their condition and ameliorate symptoms. Middle and high-income participants generally benefited from clean homes and facilities to maintain personal hygiene, they reported fewer episodes of fever and fewer injuries to the limbs, and they could afford bandages to reduce swelling of the limbs. Poorer participants lived in less-hygienic conditions and thus were more prone to infection, and they could not avoid frequent lesions and wounds because of the hazardous nature of their work. Several participants reported having wounds that turned into suppurating sores, but out of necessity they had continued to work with an infected limb.

The social and economic consequences for the whole household, not just the participant, spanned years. Loss of income because of the condition was reported by all households in the sample, across all income levels—it was not just confined to the poorest. The narratives of participants revealed reasonably well-off households, the members of which were gradually degraded into poverty by the condition over many years (Box 2). Equally, households that were already poor were pushed further toward destitution (Box 3). For some households in the sample, the presence of a member with LF had been a hindrance to family progress, rather than a cause of poverty, holding the family finances back when they could have achieved an improved standard of living. In one case, a family opted to deny the existence of the family member with lymphoedema, leaving him in a shabby room, given food, but unwashed and depressed, while other family members continued to make social and economic advancement (Box 4). A less extreme case of rejection by a high-income family (Box 4), illustrates the mental distress, as well as economic hardship, that was a consequence of lymphoedema.

While LF has been recognised for some time as a leading cause of disability globally, it has been relatively neglected by public health policy makers. Part of the reason for this neglect may be that the full extent of the disability associated with this disease is hidden and not recorded in standard assessments restricted to physical impairment. In this study, we have shown the extremely debilitating nature of LF over a long period of time when mental health, social, and economic consequences are taken into account using the affordability ladder framework. We have identified four areas in which the clinical manifestations of W. bancrofti infection had a major impact on the lives and livelihoods of patients and their families in Sri Lanka.



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