Experiencing leprosy: perceiving and coping with leprosy and its treatment. A qualitative study conducted in Nepal

Lepr Rev. 2004 Dec;75(4):327-37.


The way people interpret their disease and its treatment, or the meanings of these, has an impact on the way they deal with their disease and its treatment; meanings shape actions. In this article, the influence of the patients' interpretations on their coping with leprosy and its treatment, their help seeking and adherence behaviour is explored. This article describes the findings of a qualitative study, in which 29 people who discontinued treatment and 47 people who were released from treatment were interviewed in depth. All were registered at general health posts. Exploring the meanings of leprosy and its treatment in patients in Nepal resulted in the identification of six different categories of meanings. Each of these influenced the way people coped with leprosy and its treatment, their help seeking and adherence behaviour. These different categories are discussed. The main conclusion is that the explanatory models of the interviewees and of the health worker are different and that if we want to improve our leprosy services more health education has to be given whilst at the same time listening more carefully to those affected by this disease. This will give us greater insight into the way people understand their disease and its treatment and the measures we can take to prevent discontinuation of treatment.

Publication types

  • Comparative Study

MeSH terms

  • Adaptation, Physiological
  • Adaptation, Psychological
  • Adult
  • Cohort Studies
  • Developing Countries
  • Female
  • Health Knowledge, Attitudes, Practice*
  • Humans
  • Leprostatic Agents / adverse effects
  • Leprostatic Agents / therapeutic use*
  • Leprosy / diagnosis
  • Leprosy / drug therapy*
  • Leprosy / epidemiology
  • Leprosy / psychology*
  • Male
  • Middle Aged
  • Nepal
  • Prognosis
  • Quality of Life*
  • Risk Assessment
  • Severity of Illness Index
  • Sickness Impact Profile
  • Surveys and Questionnaires
  • Treatment Refusal


  • Leprostatic Agents