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Title: Double jeopardy: women and leprosy in India.
Author: Vlassoff C, Khot S, Rao S.
Journal: World Health Stat Q; 1996; 49(2):120-6. PubMed ID: 9050190.
Abstract:
This article presents evidence from two states of India, Bihar and Maharashtra, on the process of "dehabilitation" among male and female leprosy patients, and suggests gender-sensitive interventions to address existing problems in leprosy control. While the study investigated a wide range of gender differences in the impact of leprosy, this article focuses on only two-marriage and family reactions. Important gender differences were apparent in the impact of the disease. While both men and women were negatively affected in terms of their family and marital lives, women suffered more isolation and rejection. Psychologically, women appeared more vulnerable because they were deprived of personal contact with others in the domestic environment where they were accustomed to receiving their greatest emotional rewards. Women reported that indifference to them by other family members, or seeming negation of their presence, caused them the greatest suffering. This underscores the importance of providing information to both leprosy patients and their families about the disease and its treatment, including the possibility of cure with MDT (multi-drug therapy) and of counselling family members about their crucial role in helping patients cope and recover. This support is even more critical for women, who often lack access to the variety of outside advice and assistance available to men. The evidence presented in the article demonstrates the importance of analysing leprosy from a gender perspective, not only because this approach helps to inform our understanding of the determinants and consequences of the disease, but also because it provides new insights for improved disease control. As part of a larger study of gender differences in the stigmatization connected with leprosy in India as well as in its detection and treatment, this article presents data on the impact of leprosy on marriage and the family. A review of previous studies shows that women's immune responses to leprosy may be weakened by pregnancy, that congenital transmission is possible but rare, and that affected women may not receive counseling about risks of pregnancy or the side effects of the drugs they are given. The present study gathered data from 2495 inhabitants of Bihar and Maharashtra including 934 who were receiving treatment and living relatively normal lives (59% male), 300 members of their families, 1071 who had to leave home or a job (63% male), 100 who were rehabilitated (55% male), and 90 health workers treating the patients. Additional data were gathered from in-depth interviews and 25 case studies (13 males). The findings of this study, including the fact that the impact of leprosy was greater for women because they suffered more isolation and rejection than men, led to the following conclusions: 1) in order to improve early detection and treatment of women, they should be encouraged to seek treatment for any skin ailments; 2) leprosy workers should alleviate concerns about the efficacy of smaller pills and should counsel families about the importance of the medical regimen; 3) women should be counseled about the risks of pregnancy associated with leprosy and about the side effects of the drugs; 4) calendars and family members should be used to help patients follow their drug regimen; 5) leprosy workers should undergo gender sensitization, and more women should be recruited to examine women; and 6) the needs of children of leprosy patients should receive attention so they can have equal access to education, employment, and health care.

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