In recent years renewed interest in health-related stigma has underscored the importance of better understanding the structural underpinnings of stigma processes. This study investigated the influence of sociocultural context on perceived components of tuberculosis-related stigma in non-affected persons by comparing Haitians living in South Florida, USA, with Haitians residing in Léogane Commune, Haiti. Using the methods of cultural epidemiology, a two-phase study based on fieldwork between 2004–07 collected ethnographic data on the cultural context and components of tuberculosis (TB) stigma, and administered a stigma scale developed specifically for these populations. Thematic analysis of stigma components expressed in interviews, focus groups and observation revealed commonalities as well as distinctive emphases of TB stigma in the two comparison groups. Factor analyses of stigma scale scores confirmed the thematic differences revealed in ethnographic findings and highlight the influence of political and economic factors in shaping the meaning and experience of illness. Perceived components of TB stigma among Haitians in South Florida incorporated aspects of Haitian identity as a negatively stereotyped minority community within the larger society, while in Haiti, stigma was associated primarily with poverty, malnutrition, and HIV co-infection. Discussion of findings focuses on the social production of perceived and anticipated stigma as it is influenced by structural forces including the influences of politics, economics, institutional policies, and health service delivery structures. The findings also demonstrate the value of a transnational framework encompassing both sending and receiving countries for understanding TB related stigma in immigrant communities.
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.
This chapter describes the process of indigenization within peer support groups for Haitian women living with the physical impairment of lymphatic filariasis. The groups developed a distinctive style characterized by minimal interest in talking about the illness and a strong interest in religion and spirituality, artistic and expressive components, acquisition of practical skills, and microenterprise activities. The context of indigenous traditions of mutual aid, material needs of families, and political and economic insecurity is discussed. Results are framed within a theoretical discussion of factors that lead self-help groups into social action. The findings counterbalance traditional approaches to culturally competent health program planning by highlighting the active role of participants in tailoring an intervention to the local cultural context.
Background: Lymphatic filariasis (LF) affects more than 120 million people worldwide. Efforts to eliminate this disease require sustained community participation. This study explores community valuation of LF elimination efforts by estimating household and community willingness to pay (WTP) for the prevention of transmission and treatment of filarial lymphedema in the community of Leogane, Haiti.
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