Problems, acceptance and social inequality: a study of the deformed leprosy patients and their families.

Though the impact of social inequality on health conditions is widely known, its impact on the chronic and stigmatized disease, leprosy, has received little attention. Deformity sometimes leads to disabilities and to handicaps causing problems to the patient and his family. In this paper an attempt has been made to understand the impact of social inequality, prevalent in the form of the caste system in India on the deformed leprosy patients and on their families. This impact was examined in terms of the problems faced by the patients. A sample of 150 deformed patients and their families, drawn from two districts in Tamil Nadu, was selected for the study. About 57% of the deformed patients experienced their deformity as a handicap which caused social and economic problems while the rest did not. Of the three caste groups, the Lower Caste group experienced more severe economic problems while the Upper Caste group faced more social problems. The extent of acceptance of deformed patients in their family varied significantly among those facing and not facing problems due to their deformity. The deformed patients without any handicap were accepted in a large majority of their families (82%) regardless of their caste status. In contrast the deformed but handicapped patients were accepted differentially among the three caste groups with the Upper group accepting them in most of their families (80%) while in the Lower group much less number of families (54%) did. All the families of the deformed but not handicapped patients desired to keep their patients till their death irrespective of their caste status. On the contrary, while all the families in the Upper Caste group expressed their willingness to keep their handicapped patients in the family till their death, 10% in the Middle and 22% in the Lower Caste groups did not want to do so. This suggests the gradual marginalization, rejection and dehabilitation of the affected. Thus, one's caste status can be a broad indicator of the nature and the extent of handicaps and acceptance in the family. This factor needs to be appropriately taken care of for rehabilitation and disability management in leprosy control programmes.

Impact of knowledge of leprosy on the attitude towards leprosy patients: a community study.

NLEP, through its survey-education-treatment (SET) pattern, attempts to educate the community members about the scientific facts of leprosy with the view to improve their knowledge leading to a more positive attitude towards the leprosy afflicted. This paper explores the impact of knowledge on the attitudes of 1199 community members drawn from two States, Andhra Pradesh and Orissa, towards leprosy. The results show that, overall, a high knowledge level did not necessarily generate positive attitudes. There was a general negative attitude despite 35% to 50% of the respondents having high knowledge level. There were, however, situations in which a high level of knowledge helps to have positive attitudes. These situations differ in the two states studied.

Problems and coping strategies of families having patients with and without deformities.

Deformity in leprosy is a major problem causing serious socio-economic and psychological consequences to the patients and their families, as well as for the programmers. This paper examines the nature and extent of social and economic problems of leprosy-affected families having patients with and without deformities and their strategy to cope with those problems. The data were collected from 500 sampled families in two monotherapy districts in Tamilnadu in 1989-1990. About 20% of the families reported facing socioeconomic problems. The proportion of families having patients with deformities facing problems was ten times higher (57.3%) than those having patients with no deformities (5.7%). Majority of the problems of the affected families were economic. The major strategy adopted to deal with economic problems was to adjust within the earnings of other family members to make up the loss or reduction in income from the patient. The major social problem faced was denial of participation in the community. While families with deformed patients adopted "acceptance of their existing situation," families with non-deformed patients adopted "avoidance" as their coping strategy. Appropriate rehabilitation programmes to restore economic security to the patients and their families is called for. There is also the need to educate the community about the disease in order to dispel the myths and fears associated with leprosy.