ABSTRACT
Leprosy also known as Hansen’s disease, unlike most diseases, attracts a significant level of discrimination. Stigma attached to the disease negatively affects individuals infected with leprosy. This study sought to understand stigma and the management of leper identity in Askira/Uba Local Government Area of Borno State, Nigeria. The objectives of this study are; to determine the prevalence of leprosy in Askira/Uba Local Government Areas of Borno State, to identify the public perception of major causes of leprosy in Askira/Uba, to examine stigma attached to leprosy and the major factors contributing to leprosy stigma in Askira/Uba, to ascertain the effects of stigma on individuals infected with leprosy in Askira/Uba, to identify the coping strategies adopted by individuals infected with leprosy in Askira/Uba and to proffer suggestions on how to mitigate the effect of stigmatization of leprosy in Askira/Uba. Goffman’s theory of stigma served as the theoretical framework of the study. Qualitative and Quantitative data were collected for the study. Quantitative data were generated from two hundred and nine (209) questionnaires retrieved from sampled survey respondents. The qualitative data were generated from ten (10) in-depth interviews and three (3) focus group discussions. The findings of the study revealed that, there is high rate of leprosy in Askira/Uba LGA. The public perceptions on the major causes of leprosy are: contact with an infected person, environmental conditions (dirt) and inheritance/genetics. Factors that contribute to leprosy stigmatization were; discrediting beliefs and misconceptions regarding the causation and transmission of leprosy, fear of transmission and misconceptions regarding the incurability and high infectiousness of leprosy. The effects of stigma on individuals infected with leprosy were: social disengagement/isolation, loss of status and economic hardship. The coping strategies adopted to mitigate the effect of leprosy stigmatization include: spiritual remedies, excessive consumption of drugs, social detachment and finally migration. Based on these findings, the following recommendations were made; provision of more health facilities and drugs at the ward levels by the Government and regular seminars/workshops in the local government to sensitize the people more about leprosy causes, transmission and curability as well as the need for positive attitude toward individuals infected with leprosy.
CHAPTER ONE
INTRODUCTION
1.1 Background of the Study
The disease of leprosy among other types of diseases has been described as a disease that destroys not only the body but the soul (Olawale, 2013).The disease has afflicted humanity for a long time. It has once affected every continent and it has left behind a terrifying image in history and human memory of mutilation, rejection and exclusion from society. Since ancient times, leprosy has been regarded by many communities as contagious, mutilating and incurable with accompanying stigma that has adverse consequence for leprosy patients (WHO, 1996).
Leprosy or Hansen‘s disease is a chronic granulomatous disease caused by mycobacterium leprae, an acid fast, rod – shaped bacillus principally affecting the peripheral nerve, mucosa of the respiratory tract and the skin of human being (Ryan, 2004 in Ajibade et al, 2015:1298). Hence, victims of Leprosy often suffer physical disability and social stigma which prevents them from seeking medical treatment and often thwarts public health intervention to curb further spread of the disease. Worldwide distribution of leprosy in 2003 revealed that two to three million people are estimated to be permanently disabled because of leprosy disease with India having the highest number of cases, Brazil as second and Burma as the third (WHO, 2003; Olawale, 2013). The social stigma, alienation, discrimination and violence against sufferers of leprosy are attitudes that have continued through the ages up to the 20th century and these still exist, though in a diluted form. For instance, in Japan; the ―no leprosy patients in prefecture‖ movement started in 1930 in which absolute isolation was supported based on the social belief that; ―leprosy is a shameful disease and the purity (absence of leprosy patients) of the nation should be maintained, thus justifying isolation‖. In the United States, laws in some States allowed local health officials to arrest and confine anyone suspected of carrying the disease. In China (1937), 80 victims with leprosy, including women and children, were shot and thrown into a lime pit; and in Korea (1957), a mob beat 10 patients from a leprosarium to death to mention but a few (Dogra et al, 2013:18).
Although, the contagion paradigm or infectious nature of the disease radically transformed the way it is managed, the discovery of the microbiologic origin of leprosy did not radically change its management and the stigma and discrimination associated with it. The causal agent of leprosy ‗Mycobacterium leprae’ was first discovered by Gerhard Armauer Hansen in 1873. Hansen was a proponent of the segregation strategy in Norway. He facilitated and championed the formulation of Norwegian law on the seclusion of people diagnosed with leprosy (Dogra et al, 2013:19). As at 2006, Nigeria was one of the seven countries in Africa reporting more than 1,000 new cases of leprosy in a year, the other countries being Angola, the Democratic Republic of Congo, Ethiopia, Madagascar, Mozambique and Tanzania (Ajibade et al, 2015). Within Nigeria, leprosy is known in the southern part as “Opo”, “Ete” in West and “Mekuturu” in the North and Eastern region. The Leprosy Mission International of Nigeria has described Benue, Cross River, and Gombe State as having the highest level of disease in Nigeria followed by Adamawa, Kano, Taraba, Yobe and Zamfara (WHO, 2008 in Ajibade, et al, 2015: 1299).
Untreated or late detected leprosy causes nerve damage, which can result to physical impairment and disfigurement, and in some cases, eye defects (Mesele, 2005). Moreover, the psycho social impacts of the disease become hazardous problem, which affects the economic and social life of the individuals. In most cases, the physical deformity or impairment due to the disease provokes the stigmatized attitudes of the society towards persons affected by leprosy. This stigmatized attitude breaks the social bond of the person within the society, and results in isolation and discrimination of the leprosy affected persons from the society. Aside disability due to the disease resulting to stigmatization and exclusion, people who are clinically cured with no clear manifestations of the disease suffered the social consequence of the disease. Moreover, persons from leprosy affected family who are not infected by the disease are also isolated, discriminated and excluded from the community (ENAELP, 2004). The social exclusion does not only prohibit individuals‘ relationships with the society, it affects the material and social assets of the affected persons. Moreover, according to White (2007), it also has a significant impact on leprosy affected persons decision making and treatment success of the disease. Above all, awareness of leprosy in Nigeria especially in the North-Eastern region (Borno State inclusive) seems low. It is against this background, that this study is undertaken to examine stigma and management of leprosy victims in Askira/Uba local government area of Borno State.
1.2 Statement of the Research Problem
In 1991, the World Health Assembly passed a resolution to eliminate leprosy as a public health problem by the year 2000 using the prevalence as a measurement. Elimination was defined as a level of prevalence below one case per 10,000 people. Also, one of the achievements of this worldwide effort was the introduction of Leprosy Elimination Campaigns (LECs), which trained health workers in case finding, educate communities in order to increase awareness, and performed active case finding and patient treatment. These campaigns can thus be said to have had considerable success in many countries, especially since the diminishing stigma associated with leprosy resulted in a better outlook for patients (Naff, 2006). Despite this considerable success, victims have suffered stigmatization.
Stigma continues to have a negative effect on individuals, families and leprosy control programmes. Some patients diagnosed with leprosy may conceal their illness out of fear of rejection and exclusion from society. Others may stop their treatment prematurely out of fear of stigmatization because they experience drastic appearance changes due to side effects of treatment e.g. uneven darkening of skin due to clofazimine and facial swelling and weight gain because of prednisone (Bainson et al 1998; White, 2007). There are times when people report late, due to stigma and because of that the opportunity for the transmission of the disease increases.
Leprosy and the social stigma attached to the disease change the lives of its victims completely. Victims of leprosy are continually denied employment chances, dismissed from existing opportunities, often suffer verbal abuse, social isolation and in some societies; they are forbidden to interact with others. The stigma of leprosy is often compounded by gender inequalities and lack of protection. Hence, women may experience physical and sexual abuse and at times they are forced into prostitution (Barrett, 2005).
The socioeconomic consequences of leprosy stigma negatively impact on economic prospects of leprosy victims, which include job loss, reduced income, reduced prospect of securing job, increased dependence on others for survival, as well as poverty in households that have breadwinners who are infected with leprosy. Stigma also affects interpersonal relationship, social status of leprosy victims, extent of individuals‘ involvement in social/community activities, marital relationship as well as marriage prospect. Given the foregoing, it is pertinent to note that there is much more to a disease than just its pathological processes. For Leprosy, it is a complex condition that does not only affect patients physically; it has social and psychological implications that must be considered. Leprosy is a chronic disease which is one of the most socially stigmatized diseases known today. Stigma of leprosy leads to isolation of sufferers or marginalized group of the community. Stigma towards persons affected by leprosy and their families has also affected their quality of life due to its impact on mobility, interpersonal relationships, marriage, employment, leisure and social activities. Stigma has adverse consequences for leprosy control. Some patients would rather conceal their illness than suffer the social rejection of being stigmatized. Much of the literature available centers on the prevalence, nature, causes and consequences of the disease with little on the effect of stigmatization, control, treatment and management of Hansen‘s (leprosy) disease especially in developing countries. For instance, Kaur & Ramesh (1994) opined that leprosy is a contagious and mutilating disease which has affected people for thousands of years, and that its mode of transmission is still not exactly known but most likely it happens via; droplets from the nose and the mouth, during close contact with untreated cases. For Bainson et al (1998) and Lockwood et al (2005), Man is the most important host and unfortunately, there is no effective vaccine developed yet against the disease of leprosy. They also maintained that throughout history, the disease has been feared because people thought it was highly infectious and incurable.
On his part, LeGrand (1997) concentrated on the severity and socioeconomic effect of leprosy as a disease. According to him, leprosy can exist on a spectrum of symptoms depending on a number of factors which include: the host‘s immune response, genetics and the number of bacteria that initially infected the body. Also, the socio-economic status of a person is considered a major determinant of exposure to the disease risk. Withington et al, 2003) identified poor housing, lack of clean water, poor sanitation and lack of adequate nutrition as some other conditions associated with leprosy, which undermines the immune system and increases vulnerability to get sick. Thus, it is widely assumed that leprosy is a disease of the poor because most leprosy-affected people have no formal or limited education and that limits their choice of jobs.
This study varies from others by focusing on the stigma and management of leprosy.
1.3 Research Questions
- How prevalent is the disease of leprosy in Askira/Uba Local Government Areas of Borno State?
- What is the public perception on the major causes of leprosy in Askira/Uba Local Government Areas of Borno State
- What are the major factors contributing to leprosy stigma in Askira/Uba Local Government Areas of Borno State?
- What are the effects of stigma attached to individuals infected with leprosy in Askira/Uba Local Government Areas of Borno State?
- What are the coping strategies adopted by individuals infected with leprosy in Askira/Uba Local Government Areas of Borno State?
- What are the suggestions on how to mitigate the effect of stigmatization on leprosy victims in Askira/Uba Local Government Areas of Borno State?
1.4 Aim and Objectives of the Study
The aim of this study is to examine stigma and management of leprosy identity. However, the specific objectives of this study are as follow:
- To determine the prevalence of leprosy in Askira/Uba Local Government Areas of Borno State.
- To identify the public perception on major causes of leprosy in Askira/Uba Local Government Areas of Borno State.
- To examine stigma and the major factors contributing to leprosy stigma in Askira/UbaLocal Government Areas of Borno State.
- To ascertain the effect of stigma attached to individuals infected with leprosy in Askira/Uba Local Government Areas of Borno State.
- To identify the coping strategies adopted by individuals infected with leprosy in Askira/Uba Local Government Areas of Borno State.
- To proffer suggestions on how to mitigate the effect of stigmatization on leprosy victims in Askira/Uba Local Government Areas of Borno State.
1.5 Significance of the Study
This study has two major significances: theoretical and practical significance. The theoretical significance is that the study provides a basis for theoretical constructions for scholars in the area of leprosy victimization and management. The practical significance is for policy makers in particular and indeed, the government in general. For policy makers, the study will be useful for the formulating and implementing of policies that are suitable for ameliorating victimization of lepers. For the government, the study will provide it with a body of information, which will assist in policy formulation that criminalizes undue victimization of lepers in the country. This study also contribute to the existing body of knowledge in the area of victimization and management of leprosy, and serves as a source of literature and reference sources for future scholar as studies in the area advance.
1.6 Scope of the Study
This study is interested in the effect of stigmatization in the management of leprosy identity in Askira/Uba local government areas of Borno State. The approach and scope of this study is dictated by the objectives of the study on one hand and the study area on the other. The time frame of the study is 2015-2016. The geographical coverage of the study is confined to the Askira/Uba local government areas of Borno State. In terms of scope, the study is limited to the prevalence, causes, major factors contributing to stigma of leprosy, effects of stigma and coping strategies adopted by those infected with leprosy in Borno State and Nigeria.
1.7 Definition of Key Terms
Leper: An individual suffering from a contagious disease that affects the skin, mucous membranes, and nerves, causing discoloration and lumps on the skin and, in severe cases, disfigurement and deformities.
Stigma: A social identity associated with a particular circumstance, quality, or person.
Coping: The process of contending with life difficulties in an effort to live or work through them.
Prevalence: The fact or condition of being prevalent; commonness
