%0 Journal Article
%T The Meaning of Leprosy and Everyday Experiences: An Exploration in Cirebon, Indonesia
%A Ruth M. H. Peters
%A Dadun
%A Mimi Lusli
%A Beatriz Miranda-Galarza
%A Wim H. van Brakel
%A Marjolein B. M. Zweekhorst
%A Rita Damayanti
%A Francisia S. S. E. Seda
%A Joske F. G. Bunders
%A Irwanto
%J Journal of Tropical Medicine
%D 2013
%I Hindawi Publishing Corporation
%R 10.1155/2013/507034
%X It is imperative to consider the meaning of leprosy and everyday experiences of people affected by leprosy and key persons in the community if one aims to make leprosy services more effective, which appears necessary in Indonesia given the large numbers of new cases detected annually. However, little is written in the international literature about the experiences of people currently being treated for leprosy, those cured, or other key informants. This paper analyses the narratives of the people by drawing upon in-depth interviews with 53 participants and 20 focus groups discussions. The participants were purposively selected. We provide insights into the experiences of people and the meaning they give to leprosy and highlight aspect of aetiology, spirituality, religion, darkening of the skin, and sorcery. We also examine experiences of seeking care and focused on the impact of the disease in particular on the elderly and children. In conclusion, the continued need for implementation of leprosy services in Indonesia is very evident. The diversities in people¡¯s experiences with leprosy indicate a demand for responsive leprosy services to serve the diverse needs, including services for those formally declared to be ¡°cured.¡± 1. Introduction Over the last decades, efforts in the field of leprosy have focused on curing the disease, controlling its spread, and preventing impairments. From a global perspective the results are impressive and commendable with a decline of the number of new cases and the reduction of the proportion with severe visual impairments at diagnosis [1]. For some countries, among others Indonesia, the picture is not yet so notable. Also for implications beyond the medical scope such as stigma, the road is still long [2¨C4]. Leprosy has been associated with stigma throughout history [5¨C9]. Manifestations of stigma, including self-stigma, social exclusion, and discrimination, although nowadays more subtle with less ostracism, remain a reality for many people affected [10]. To help leprosy services become more perceptive towards issues surrounding leprosy-related stigma and reduce its impact, it is necessary to understand stigma from the perspective of the people affected and their family members. Also the views of key persons in the community, such as neighbours, teachers, religious leaders, and health workers, should be considered. ¡°The human face of leprosy¡± edited by Gokhale and Sohoni [11] in 1999 already emphasised the need for such stories. Several studies related to leprosy have been executed in Indonesia focussing on biomedical
%U http://www.hindawi.com/journals/jtm/2013/507034/