A Sequential Explanatory Study on the Health-Seeking Behavior and the Lived Experiences of Stigma of People with Hansen’s Disease

Abstract

Hansen's disease (leprosy) is a skin disease that accounts for serious deformities and disabilities, leading to stigmatization and psychosocial suffering. This study sought to describe the health seeking behavior of people with leprosy and their lived experience of stigma. Participants were 250 people diagnosed with leprosy. A Knowledge, Attitude and Practices (KAP) Questionnaire and Measurement Scale was devised to study the health-seeking behavior of people with leprosy and determine significant factors that affect their health-seeking behavior. The results showed that social psychological factors (i.e, motivation, learning and perception of themselves) had the most impact on the health-seeking behavior of patients. Significant differences were found among respondents and their health-seeking behavior when they were categorized according to sex, civil status, educational attainment, onset of illness, and onset of treatment. Additionally, the participants experienced stigma in the forms of self-stigma and public stigma. Feelings of hopelessness, isolation, embarrassment, and overt discrimination were reported as the consequences of their stigma. However, their experiences with leprosy were not totally negative. The participants reported being closer to God, being involved in support and information groups as advocates of leprosy and having found a new home where they are accepted. There is still a need for more information and support groups for patients to improve their perception of themselves and their illness. Reducing the stigma that has long been attached to leprosy entails raising awareness on the disease, its causes, treatment, and management.