LEPROSY AND ITS SOCIAL STIGMA: A COMMUNITY PERSPECTIVE

Abstract

INTRODUCTION: Leprosy was and is one of the major stigmatizing conditions affecting multiple facets of a patient's life. Much of this burden is owed to patients’ own family, the community, health care workers and even themselves. The consequences of stigma are pervasive, affecting not just the physical health, mental well being and health seeking behavior, but also having significant impact on social interactions, marriages and employment. Thus this disease of antiquity has major economic implications even in the 21st century.

OBJECTIVE: To explore the prevalence of stigma against leprosy among community members in Hyderabad, Telangana, India.

MATERIALS & METHODS: Data was collected over a period of 12 months from April 2022 to March 2023. Demographic details were collected and participants were administered two standardized questionnaires - STIGMA – EMIC (community version) - Explanatory Model Interview Catalogue - and the Social Distance Scale. Results are expressed in numbers and percentages for each category.

RESULTS: Out of 108 participants 48% were female, 47% were male and 5% -identified as other. 56 participants were of the age group 26 to 35 years, 32 were of 36 to 50 years old and 120 of 51 to 65 years old. 52 of the participants held a professional degree. The others were illiterate, Primary School, Middle school, High School, Intermediate / Diploma holders and Graduates. Almost 60% of respondents said that a person with leprosy would hide their condition, it causes shame or  embarrassment and people in their community would avoid them. 42 % thought less of a person with leprosy, 45% said having leprosy would cause difficulty for a person to find work and would refuse to visit their home. 60% of the participants said that they would dislike buying food from them, 73% said leprosy would be a problem for a person to get married, 62% said having leprosy could cause problems in an ongoing marriage, 41% said it could cause problems for the relatives of a leprosy patient to get married, 45% did not want their children to marry someone with Hansen’s or introduce them to a prospective bride/groom. A few encouraging findings that we discovered were that more than 60% said that they would recommend someone with leprosy for a job and did not think less of themselves if any of their family members had leprosy. More than 50% did not mind renting out a room in their home to them, being their neighbor or co-worker.

DISCUSSION: Our participants belief that patients with Leprosy might conceal the disease, unwillingness to enter their home or buy food from them are all indicators that Hansen’s is still very much a stigmatizing disease with wider implications such as hesitant health seeking behavior leading to delay in diagnosis, treatment and subsequent disability development. A leprosy affected person or their family member experience difficulties in finding a partner and thus marriage, even an  ongoing one, as seen in our study. The degree of stigma experienced by a person with Hansen’s are also be influenced by various factors such as socioeconomic status, education and especially gender, where we see more incidence of cancellation of marriage after knowing the leprosy status, difficulty finding partners, divorce, sexual abuse, and domestic violence among female patients. A few of the more encouraging findings from our study was that people are willing to  recommend someone with leprosy for a job and did not think less of themselves if any of their  family members had leprosy. Neither did they mind being their neighbor or co-worker. Thus we see that while people are more open to providing jobs and homes to those afflicted, they are certainly unwilling to welcome them into their own families.