Experiencing leprosy - LEPRA Health in Action
336 M. L. Heijnders the early symptoms of leprosy has to be carefully developed and given in order to prevent stigmatization of the early signs of leprosy. The use of different names for leprosy is also recognized by other researchers, 9,12,13 although these studies do not explain how and when these different names are used. The results of this study show that behind these different names different types of explanatory patient models exist. During the consultation, it is important to examine which local word for leprosy people use and explore which meaning this word has for them. If people use one of the words which refer to the Charma Rog type of explanatory model the health worker must be aware that the person affected may deny having Kustha Rog and consequently decide to discontinue treatment. While analysing people’s experiences with side-effects, it became clear that the interviewees reported side-effects that are not clearly described in the medical literature. Although not all side effects were experienced as a burden, it made life and treatment continuation more difficult. Due to time constraints and busy clinics, information on side effects was rarely given to the interviewees, who surely need (more) information on any sideeffects that can develop. This study demonstrated not only that many interviewees said that they had developed side-effects, but it also showed the importance of the meanings these side-effects had for them and how it influenced adherence to treatment. A difference exists between the understanding of cure by the health worker and by those affected by leprosy. For most interviewees ‘to be cured’ is to become as you were before you had the disease leprosy. As leprosy is mainly associated with wounds and deformities, it is understandable that people doubt that it is curable, so that if symptoms remain they want to continue treatment after the health worker has released them from treatment. Other studies obtained similar results. 9,14,15 – 16 For most persons affected by leprosy ‘to be cured’ is to become as you were before you had the disease. 16 More information is needed on the implications of symptoms remaining, the meaning of ‘social cure’, regaining social position in the community, and the possibility of the disappearance of the stigma. Patients and health professionals can have different types of explanatory models. Kleinman 4 uses the distinction between disease and illness. Explanatory models of medically trained people tell us something about how they understand and treat sickness. Here Kleinman uses the term ‘disease’ to refer to a malfunctioning of biological and/or psychological processes. The models of the patients and their families tell us something about how they make sense of episodes of their sickness; here he uses the term ‘illness’. Patients seek not only symptom relief but also personally and socially meaningful explanations and psychological treatment for illness. The explanatory patient models are shaped by an interplay between the person, the illness and the culture or environment. The differences in the interpretations of the disease and its treatment that existed between the health worker and the person affected were rarely discussed between the two and this resulted in people remaining with unanswered questions and worries. In some cases, the difference in interpretation caused people to delay in seeking help, or to re-evaluate their decision regarding treatment continuation. Health education has to include the major signs and symptoms of leprosy, means of transmission, side-effects, definition of cure, needlessness of segregation (isolation) and the cause of wounds. What we should not forget, however, is that in the consultation between the health worker and the person affected, it is not only important that health education is given, but also that people’s understanding of their disease and its treatment is explored and discussed. During consultation information should be shared between the health worker and the person affected. Training in better communication skills for health workers could include more attention to the people’s perceptions of leprosy and its
treatment and to their fears and social exposure. Only in this way, can we understand what it means for individuals to have leprosy, to take treatment regularly and prevent them from actions that are undesirable from a medical point of view. Acknowledgements I am indebted to both Ann Taket and Rayah Feldman (both of the South Bank University, London) for their guidance and encouragement throughout the process of this research and the writing of this article. The fieldwork could not have been carried out with support from several individuals. These are Dr K. P. Dhakal (project leader Eastern Leprosy Control Project); the interviewers, Darsana, Mana Dahal, Sunila Tuladhar, Seema Chhetri, Subodh Maleku, Mahadev Chaudhary and Nirmal Pradhan; the interpreters, Anu, Chunnu and Darsana. I am thankful to all the staff of the health posts for allowing me access to the patient records and patient files. Many thanks go to the interviewees who contributed to this research. Their accounts were not only indispensable to this research, but they had the courage to discuss their experience and problems faced during treatment in a context in which many conceal their disease. Finally, the author thanks the anonymous reviewers of the paper and Dr C. McDougall, who provided excellent suggestions for enhancing its value. References Experiencing leprosy 337 1 MacLachlan M. Culture and health. Trinity College, Wiley, Dublin, 1997. 2 Helman CG. Culture, health and illness. An introduction for health professionals. Butterworth-Heinemann, Oxford 1994, pp. 107–108. 3 Waxler NE. Learning to be a leper: a case study in the social construction of illness. In: Mishler EG, Amara Singham LR, and Hauser ST. (eds) Social contexts of health, illness, and patient care. Cambridge University Press, Cambridge 1981, pp. 169–191. 4 Kleinman A. Patients and healers in the context of culture: An exploration of the borderland between anthropology, medicine, and psychiatry. University of California Press, Berkeley, 1980. 5 Heijnders ML. Understanding adherence in leprosy. Experiencing and making sense of leprosy and its treatment in its social context. A qualitative study conducted in the eastern Terai region of Nepal. PhD, Faculty of Health, London, South Bank University, 2002. 6 Strauss A, Corbin J. Grounded theory methodology. An overview. In: Denzin NK, Lincoln YS (eds) Strategies of qualitative inquiry. Sage Publications, London, 1998. 7 Yin RK. Case study research. Design and methods. 2nd edn. Sage Publications, London, 1994. 8 Scambler G. Perceiving and coping with stigmatizing illness. In: Fitzpatrick R, Hinton J et al. (eds) The experience of illness. Tavistock, London, 1984, pp. 203–226. 9 Hyland JE. A socio-cultural study of leprosy in Nepal: compliance, patient illness career patterns and health education. PhD thesis, School of Education and Department of Community Health, University of Tasmania, Tasmania, 1993. 10 Nishimizu M, Rothenbuhle HM et al. Nepal, operational issues and prioritization of resources in the health sector (19613), Document of the World Bank, 2000. 11 Robertson LM, Nicholls PG et al. Delay in presentation and start of treatment in leprosy: experience in an out-patient clinic in Nepal. Lepr Rev 71: 511–516. 12 De Stigter DH, De Geus L, Heynders ML. Leprosy: between acceptance and segregation. Community behaviour towards persons affected by leprosy in eastern Nepal. Lepr Rev, 2000; 71: 492–498. 13 Hyland J. Leprosy terminology in Nepal. A letter to the editor. Lepr Rev, 1999; 70: 76. 14 Collins JM. Dislodgement of leprosy patients – the causes and possible solutions. Internal Nepal Fellowship, Pokhara, Nepal, 1979. 15 Pearson MA. Leprosy in West Nepal: social and spatial perspectives. University of Liverpool, Liverpool 1985. 16 Engelbrektsson UB. The experience of leprosy, Nepal. In: Gokhale SD and Sohoni N (eds) Human face of leprosy Ulhas Latkar Ameya Prakashan, Pune, India, 1999.