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.