A socio-cultural study of leprosy in Nepal : compliance, patient illness career patterns and health education

To understand leprosy in Nepal and its social consequences it is Important to see it in context. The socio-cultural factors involved in belief systems which surround everyday life are essential to understanding, as well as those of geography and economics, of infrastructure and services, as they all affect the feasibility of travel to clinics. Patient persistence or \drop out\" from clinic as part of their illness \"career\" is a phenomenon which merits study. This research examines the proposition within an existing compliance model that clinic attendance (a crude measure of compliance) is related to patients' beliefs about their condition being close to the western medical notions of their care-ers; and then seeks socio-cultural factors which may be affecting the willingness and ability of patients to travel to clinic regularly. To western scientific medicine leprosy is caused by M.leprae in an immune-deficient host and results in physical signs. It is treated with drugs (antibiotic and anti-inflammatory) and other therapies like physiotherapy and surgery. Leprosy services are set up and health workers trained according to this scientific model. Leprosy is controlled by treating sufferers for up to 24 months with multi-drug therapy. \"Cure\" in terms of this model means reduction or removal of the cause. The culture of Nepal is underscored by the hierarchical Hindu caste system with notions of ritual purity and practices for maintaining social harmony. Ninety per cent of Nepali people are subsistence farmers living in inter-dependent rural communities. The medical system of Nepal is a complex whole with personalistic naturalistic and some scientific notions of illness. The concept of one absolute causal energy lies behind the dealing with new and alien ideas by accommodation rather than categorisation which characterises western medicine. Data discussed in this thesis are derived from 160 responses to a community questionnaire survey interviews with 34 patients 28 health workers and field observation in the clinics. Methods of analysing complex qualitative data have been developed during the research including a patient career \"grid\" through which associations between various patient responses are shown. Beliefs about leprosy are found to be unified but many-faceted: physical meaning deformity and disability; psychological leading to depression and even suicide; religious 'a amle has fallen um me\"; socio-cultural bringing an obligation to separate or expel the affected person tantamount to \"social death\". Patient experiences of the \"illness\" of leprosy the physical aspects differ widely because of individual variation in immune response to M.leprae. The social integration of people who have had the diagnosis of the \"disease\" Of leprosy is threatened when other people come to know about it. Most patients are discovered to be applying the technique of \"silence\" and \"concealment\" a socio-cultural device for keeping matters private in rural communities in an endeavour to prevent through avoiding the label of leprosy as \"sickness\" application of the sanction of social separation or expulsion. If \"exposure\" seems imminent \"swift action\" may follow which could be withdrawal from treatment or from the village with family or alone. Patients are found to be holding apparently conflicting notions about leprosy which are not associated with persistence or \"drop out\" from clinic. An association is found between threat of exposure and withdrawal from clinic attendance. The Interrelations of social \"cure\" meaning restoration of social integration and medical \"cure\" are explored. The view of leprosy in its socio-cultural context yields rich Insights crucial to the appropriate solving of problems such as non-compliance in leprosy control. Findings emerge which have implications for the shaping of services the planning of health education and training programmes. They suggest that an ethnomedical or non-ethnocentric approach to health care and education problems in cross-cultural situations is essential."