Childhood leprosy and social response in South India

• Published in: Social science & medicine (1982) 1984, Vol.19 (8), p.853-865
• Main Author: Berreman, Janet M.
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Bacterial diseases; Biological and medical sciences; Child; Child, Preschool; Community Health Services - organization & administration; Dapsone - therapeutic use; Female; Health Education; Health Surveys; Human bacterial diseases; Humans; India; Infectious diseases; Leprosy; Leprosy - diagnosis; Leprosy - psychology; Leprosy - therapy; Male; Medical sciences; Patient Compliance; Social Perception; Tropical bacterial diseases; Tropical medicine
• ISSN: 0277-9536; 1873-5347
• DOI: 10.1016/0277-9536(84)90403-9

This paper reports a field study of childhood leprosy in the state of Karnataka, India, as encountered through a private, secular leprosy hospital and its rural outpatient program serving some 60 villages. Symptoms of leprosy among children are subtle, ambiguous and not readily distinguishable from those of relatively innocuous skin ailments with which villagers of the region commonly lump them. In addition, severe stigma attaches to the disease. As a result, diagnosis tends to be resisted, rendering effective treatment difficult. The research focused on the hospital's comprehensive program of diagnosis, treatment, education and rehabilitation, and the responses of people to it. Three categories of response to diagnosis and treatment, as defined by the hospital program, were investigated: regular acceptors, irregular acceptors and refusers. Contratry to expectation, those who accept treatment irregularly and hence ineffectively, express greater awareness of the cause, symptoms and treatment of the disease than either those who accept regular treatment or those who refuse treatment. Despite frequent verbal denials of belief in, or fear of, contagion, people's behavior regarding leprosy and its victims indicates that such beliefs are indeed harbored. The effectiveness of the program is assessed with reference to its policies and procedures as they affect the rural population. Especially effective is the policy of not confronting people with diagnoses of leprosy in problematic childhood cases, but of asserting instead that leprosy can be averted if treatment is acceptable. Resistance generated by the fear and stigma of leprosy is thus mitigated by presenting its childhood symptoms as pre-leprous rather than as early leprosy. The research concludes that the program has achieved notable success in each of its aspects and is therefore worthy of emulation elsewhere.