Filarial elephantiasis among Haitian women: social context and behavioural factors in treatment

Abstract

SummaryFew studies have addressed the social and behavioural aspects of lymphatic filariasis. The research reported here investigated the ethnographic context of filarial elephantiasis among women in Léogane, Haiti, and focused on explanatory models of the illness, the impact of the disease on women's lives, and the difficulties patients experienced in following a therapeutic regimen provided at a local hospital. Qualitative data were collected through focus group and individual interviews and direct observation of patients enrolled in the treatment programme. Results indicate that traditional understanding and treatment for the disease are prevalent in the community, although biomedical explanations are gaining credence as a consequence of long-term filariasis control activities in this area. Women's lives are substantially burdened both socially and economically by the physical impairment of elephantiasis, most notably in the loss of income due to restrictions on mobility. The degree of social discrimination encountered varies by the timing of onset of symptoms in the life course. Difficulties encountered with the physical therapy regimen included maintenance of the compressive bandage and availability of suitable foot wear. Similarities between these findings and those reported for other parts of the world are noted. Recommendations from the study cite the need for community education and peer support activities to provide a knowledge base and support structure for current and future intervention programmes. keywords filariasis, Haiti, women & social factors.

Understanding the community impact of lymphatic filariasis: a review of the sociocultural literature

“…In Haiti, Coreil et al found that the risk of dysfunction and unhappiness was greater in marriages where the wife had physical manifestations of filariasis. 24 This is supported by data from coastal Ghana. 20 Gyapong et al 25 suggest that the physical and psychological burden borne by men has a negative impact on their marriage and employment prospects.…”

“…27 As the disease progresses, the individual's capacity to labour, both productively and reproductively, is increasingly hampered. Coreil et al 24 note that in the Haitian context, while impairment of mobility impacts upon the ability to garden or sell produce in the market, acute attacks are equally detrimental to individuals' ability to support themselves and their family. This finding is echoed by the work of Gyapong et al 25 and Suma et al 28 As the disease progresses, the affected individual becomes too severely disabled to contribute to household labour and further burdens the household economy.…”

“…Several researchers have highlighted the dearth of sociocultural information on local beliefs, perceptions and behaviours towards the disease. 24,29,30 The paucity of sociocultural data is a common feature of other neglected tropical diseases. Even with malaria, the neglected parasitic disease with the greatest tradition of sociobehavioural research, Williams and Jones 31 observed that this research, while key to successful outcomes, has yet to realize its full potential in contributing to control.…”

“…Sociocultural research methodologies have been employed by researchers in Africa, 20,35 the Caribbean 24 and India. 28 The use of focus groups, key informants and participant appraisal techniques yield quantitative and qualitative data that improve the understanding of local ways of accounting for, explaining and treating the disease.…”

A community-based trial for the control of lymphatic filariasis and iodine deficiency using salt fortified with diethylcarbamazine and iodine.

“…[3][4][5][6] The physical impairments faced by victims are compounded by the social and psychological implications of overt disease. 7,8 The cost of acute filariasis is estimated at more than four million Disability-adjusted life years (DALYs) worldwide, in addition to the economic burden of lost productivity and medical costs. [9][10][11][12][13] With the advent of simple and sensitive diagnostic techniques (ICT card tests) and new therapeutic strategies (drug combinations) as well as strategies to control morbidity, widespread interest has developed for the elimination of this disease.…”