ABSTRACT
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.
Subject(s)
Health Knowledge, Attitudes, Practice , Leprostatic Agents/therapeutic use , Leprosy/drug therapy , Leprosy/psychology , Quality of Life , Adaptation, Physiological , Adaptation, Psychological , Adult , Cohort Studies , Developing Countries , Female , Humans , Leprostatic Agents/adverse effects , Leprosy/diagnosis , Leprosy/epidemiology , Male , Middle Aged , Nepal , Prognosis , Risk Assessment , Severity of Illness Index , Sickness Impact Profile , Surveys and Questionnaires , Treatment RefusalABSTRACT
Based on a qualitative interview study conducted in eastern Nepal, this paper explores the quality of services received by people with leprosy and the impact of quality of services received on adherence behaviour. The study found that a person's status within the family and community influenced the quality of care, which in turn affected adherence to treatment. Five major types of deficiency in the quality of care experienced were identified, particularly by the poor people and by women. These were the attitude and behaviour of the health worker, the practitioner-centeredness of the care and lack of information sharing, the organization of the health services, barriers in accessibility of the leprosy services, and lack of, or carelessness in, patient referral. This paper explores these types of deficiencies and the way people affected by leprosy cope with them. People of a higher status had access to enabling factors which allowed them to continue treatment, people of a lower status had to endure many disadvantages which had a great influence on their adherence behaviour.
Subject(s)
Health Services Accessibility/statistics & numerical data , Leprosy/psychology , Leprosy/therapy , Outcome Assessment, Health Care , Patient Acceptance of Health Care , Adaptation, Psychological , Developing Countries , Female , Health Care Surveys , Humans , Leprosy/diagnosis , Male , Nepal , Patient Compliance , Sickness Impact Profile , Surveys and QuestionnairesABSTRACT
Leprosy in Nepal is a stigmatizing disease. This paper explores the different coping strategies employed by people affected by leprosy to manage stigma. It is based on a qualitative study conducted in the eastern part of Nepal. It will show that a difference exists between experienced stigma and the anticipation of stigma. Both types of stigma result in different coping strategies. In managing stigma people go through different phases. This paper will show that stigma is a dynamic process, and I will elaborate on the concealment cycle, as developed by Hyland, to produce a more detailed understanding of the stigmatization process in Nepal. Doing so, it highlights the importance of a mutual concealment phase and the importance of triggers to exposure and discrimination. Changing from one phase to a subsequent phase in the stigmatization process is always triggered. It highlights further, that even within the same culture and even the same village, social differentiation makes a significant difference on the impact of stigma and the coping strategies employed in managing stigma. Stigma enforces already existing inequalities in social class, gender, and age.