FUNCIONES DE ENFERMERÍA

Subhasis Bhadra1

Abstract:

There are hundreds of leprosy colonies in “leprosy-free” India, where they are living on meagre livelihood options in socially oppressive situations. Still leprosy, the ancient disease is in raising spree, though it is curable, preventable. This research evaluated the livelihood interventions, across India in 26 colonies. There were a series of negative, undesirable life-events in the life of the leprosy affected persons that dehumanized their identity. These events are analysed from the life course perspective. Though some important successes through livelihood interventions are made, still strong focuses on multidimensional strategies of inclusion, capital-building are required.

Key words: Livelihood, Capitals, Life Course, Poverty, Life events, Marginalization, Stigma

Introduction:

There are many leprosy colonies (approximately 1000) in different remote corners of India, though, in the year 2005 India officially eliminated leprosy and the rate of prevalence has been brought down to less than 1 per 10,000 population (Mishra, 2016). In these settlement colonies leprosy affected communities are living with meagre livelihood options as available and in impoverished situation often without basic amenities. They continue to live in a socially oppressive situation being ostracised and excluded with social stigma. Leprosy is typically a slow onset disease causing delay in detection and treatment. It is a painless disease and the longer incubation period makes it difficult to diagnose the disease early enough for better treatment and management. It causes damage to the skin and peripheral nerves that lead to loss of fingers, toes, erosion of nose, lips and also patches on the skin. The visible deformities, disfiguration leads to the problem of social stigma. Physical deformities, loss of limb usually leads to different amount of disabilities that restrict their capacity to perform various activities needed

1 Associate Professor, Department of Social work, Central University of Rajasthan, email: [email protected]

for effective livelihood generation. Similarly, stigma causes multiple social barriers for participation in social and economic activities that are essential for adopting and sustaining a livelihood venture. The physical disabilities and social restrictions become part of their whole life-span that determines their capabilities to access livelihood resources and services throughout the cycle of living and the level of well-being.

Leprosy Scenario Globally and in India:

The mention of leprosy in found in ancient script and it was reported before 4300 years of Christ in Egypt. Subsequently, leprosy was detected in India about 4000 years ago (Noriega, Chiacchio, Noriega, Pereira, & Vieira, 2016). The disease is recognized as a public health problem associated with systemic denial of human rights and civil rights. The epidemiological data that included information from 102 countries, published by the World Health Organization (2014), showed that Southeast Asia and Americas remain the most affected areas by Leprosy with prevalence rate of 8.38 and 3.78 per 10,000 populations, respectively (WHO, 2014).

Considering the worrying situation, in 1991 WHO set its goal to eliminate leprosy as a public health problem by lowering the rate of prevalence to lower than 1, per 10,000 inhabitants. The New case detection rate in India, was 126 913, highest in the world. India, Brazil and Indonesia are most endemic that account for approximately 81% of new cases worldwide. The medical operational guidelines strictly focus on the disability assessment at early diagnosis and reducing the disability or incapacity of the patient. Disability and limitations in the daily activities is one of the main problems as it directly impacts the economically active age group. The disabilities within the peripheral nervous system can occur before, during or even after treatment, based on the onset and the treatment received by the patient. The degree of disability imposes functional restriction as well as future prospect of rehabilitation or developing independent livelihood activities. The degree of disability medically is ranged between 0 to II for leprosy. While assessing the disability, the condition of eyes, hands and feet must be determined. Grade 0 disability denotes no-disability, Grade-I means, loss of sensation in hand and/ or feet, and Grade-II indicates the presence of visible damage

or disability (Noriega, Chiacchio, Noriega, Pereira, & Vieira, 2016). The control of the disease focus on early detection, specific treatment with multi drug therapy and awareness generation of the mass to promote voluntary treatment and reduction of prejudices, myths, and social stigma around the disease. Case detection method of leprosy is classified as passive and active detection. The primary requirement for leprosy control is strengthening passive detection that includes spontaneous demand for treatment by the population from health unit or referral of the suspected cases by the doctors, health workers to tertiary health care facility so as to confirm the initial diagnosis. Therefore, awareness among the mass about the signs and symptoms of leprosy is most crucial for detection and prevention. Active detection denotes search of potential cases through epidemiological surveillance, evaluation of the high risk groups, identification of the case source, specifically while a child under 15 years old is diagnosed with leprosy that reflects an early and intense exposure with higher threat of contamination and spread of disease. For, active detection training of health care personnel, small scale campaigns, taking care of social issues, and regular monitoring of confirmed cases, are very important (WHO, 2009).

Leprosy is an absolutely curable disease with Multi Drug Therapy and in India it is available free of cost. India has adopted National Leprosy Eradication Programme (NLEP) in 1983 under Ministry of Health and Family Welfare yet, it is still on the rise. The annual report 2016-17 of NLEP has given a glimpse of the leprosy situation in India. During 2016-17, a total of 135485 new cases were detected, and the annual new case detection rate was 10.17 per 100,000 populations. Among the new cases total of 5245 cases with grade-II disability was detected and a total of 11792 child cases were recorded, indicating the child case rate is 8.7%. In India 128 districts (out of 682 districts) reported prevalence rate >1/10000 population. On March 2017, 53 districts in 11 states / UTs has prevalence rate >2/10000 population, namely, Bihar, Odisha, Chattishgarh, Gujarat, Jharkhand, Madhya Pradesh, Maharastra, West Bengal, Dadar & Nagar Haveli, Lakshadeep, and Delhi (Central Leprosy Division, 2017).

Socio-economic consequences of leprosy:

From the perspective of public health, it is well established that social stigma and the associated barriers are the major disabling factors for the people suffering from leprosy and their family members. To tackle the problem, public health activities include awareness generation, early detection for prevention of disease, improvement of quality of living (housing, water, sanitation, hygiene facilities), monitoring health status, mobilizing community participatory action for well-being, researches to bring scientific insight and innovative solution that can help in designing new policies and programmes. Public health is a combination of scientific and social approach to improve the community health and well-being of the target population through organized effort (Novick & Morrow, 2008). Leprosy control and prevention strategies as a whole follow public health approach to remove the social and medical barriers for the patients and their family members. The whole life and future of the leprosy affected persons starts revolving around the disease that finally determines his/her life course, may it be in treatment, living in segregated location, rejection from family members, losing the social supports, acquiring new diseased status, opting poor livelihood venture and finally living on charity in an impoverished condition and being rejected by family, community and even the state or government.

Livelihood option is largely determined by physical abilities and opportunities that support effective participation in economic activities to earn a means of living with dignity to maintain a decent standard and well-being. While leprosy creates a complex reality not limited within physical restrictions, rather it is a combination of stigma and discrimination that lead to restriction in participation in various mainstream or even family social and economic activities (Brakel, et. al, 2012). Active restriction to participate in mainstream activities lead to marginalization of leprosy-affected people and communities in multiple spheres of social and economic life. The social stigma and marginalization cause discrimination that contributes to disability within the environment. “Stigma develops out of an initial, universally held motivation to avoid danger, followed by an (often exaggerated) perception of characteristics that promote threat, accompanied by a social sharing of these perceptions

with others. Moreover, stigmas exist primarily in the minds of stigmatizers and stigmatized individuals as cultural social constructions…” (Stangor & Crandall, 2000). Stigma is origin of a typical social process, experienced or anticipated by the stigmatised individuals or communities, characterized by exclusion, rejection, often blame or devaluation; those results from experience, perception or reasonable anticipation of an adverse social judgement, and lack of scientific understanding about leprosy. “Stigma affects not only patient, but families, groups and communities and even nation” (Weiss , 2008). Public stigma is associated with belief system and general public prejudices held by the people causing social participation restriction and discrimination for leprosy and other tropical diseases (Weiss , 2008). A model of stigma in case of leprosy is presented in the bulletin Medicus Mundi Schweiz (2015). Stigma forms the perspective of people who are stigmatised and the stigmatiser. Leprosy affected people anticipate, internalize and experience stigma and further its consequences. On the other hand the stigmatisers perceive, symbolize, develop fear and enact on the same. In both the situations the ultimate sufferer is the leprosy affected persons and communities who are forced to live in segregation leading to poor quality of life and extreme marginalization. As a result, the persons affected by leprosy face number of psychosocial issues and are having high risk of developing psychiatric disorders (Singh, 2012).

The circle of marginalization starts from the diseased status that shapes the psychology, personality, aspiration, opportunities for education, ability to perform a job, choose a livelihood option, and finally to live a life with dignity or not, become the central questions. The progressive nature of the disease and visible deformities leading to disabilities become a base for discrimination of the persons affected by leprosy. These restrictions became very prominent on four occasions of life choices. These are area of living and housing; choice of livelihood, threat to development of self-esteem, and lack of opportunities for participation.

Living and housing: Mostly, the community or areas where the people affected by leprosy are living are identified as leprosy colony or “Kustha

Ashram” and such local terminology that stigmatize the area and people. In local language, Leprosy is known is Kustha, Kori, and often it is seen that the areas are marked by their segregation, poverty, and living on marginal incomes. The colonies typically originated on their own, in the surroundings of the leprosy hospitals where people came for treatment and often cannot go back as mostly they are deserted or are actively refused to be allowed back home by their relatives. These colonies are a kind of manifestation of “dehabilitation” that is losing home and traditional support systems (Kaur & Van, 2002). It is a matter of imposing shame, fear, and inducing guilt about a dehumanized birth due to curse of god. Through social and cultural practices, often the people are made to believe their misfortune and they are made to accept charity. It is seen that these colonies are frequented by the charity based organization, philanthropic donors, reinforcing dependency. Many of these colonies of leprosy affected people are located on unauthorized land. Some of the colonies are developed by few Charity based organization. Living, on unauthorized colony often causes problems for the inmates to develop their own property or having authorized electricity or water connection or other services. These unauthorized lands are located inside the forested areas, or on railway land, municipality owned land or other government vested land. Thus, in many colonies the people do not have their land ownership and related legal documents. In few colonies the houses and land is in the name of an organization (often registered as trust or society), and the individual owners are unable to avail services like bank loan, electricity supply or other benefits. Most of the leprosy colonies have poor or no sanitation system except a few.

The place and area of living typically determines the opportunities for development. While the people affected by leprosy live in unhygienic condition, or in unauthorized land, they are also excluded from other services and their accessibility to education, health care, job opportunities, and other developmental opportunities become limited and marginalization continues with poor quality of life throughout the life-cycle and generation (Pitchaimani, Sampathkumar, & Joydeepa, 2018). While any one of the next generation of the leprosy affected persons is able to have a better income, they try to shift out of the area to gain a new identity. Though, it is difficult but this is

not uncommon among the offspring of the leprosy affected parents. Choice of livelihood: The leprosy affected people have limited livelihood options, not only due to disability or physical restriction, but more due to social barriers. The people affected by leprosy are not allowed to enter or work in many commonly available vocations. The touch of a leprosy affected person is grossly avoided, thus they are mostly not appointed to any positions. Once a person develops leprosy the person may also be sacked from the job, or is forced to leave the place to avoid further humiliation. The situation is also complicated as many of the people affected by leprosy are usually not educated enough or do not have enough employable skills. The traditional belief and social restrictions imposed on them promoted practice of begging among the leprosy affected persons and by their family members. “Begging is a form of interaction that falls betwixt and between the more widely analysed categories of market exchange and of gift giving” (Staples, 2007, p. 169). This practice is strongly being informally organized and leprosy affected persons as beggars is a common sight in many cities, in front of temples, dargas, mosques, churches on specific days and time. On many occasions beggars go out for special collection, like during Diwali, New Year, Christmas, the collection of alms is much higher as people tend to donate as part of religious practice and faith. Begging is often supported by religious philosophy and practice. The common practices of giving alms makes begging become an easy and commonplace option for leprosy affected persons or for people with disabilities as a means of survival and earning (Jung, et al., 2020). In the process of dehabilitation, while the leprosy affected people have limited choice of opting for any other survival strategy, begging become an important practice and develops a sub-culture among them. While practice of begging has become an accepted means of living among the individuals affected by leprosy, it becomes difficult to change the practice in long-term. Re-establishing the faith and trust and self-worth among the leprosy affected persons is a crucial component for developing livelihood.

Threat to development of Self-Esteem: Self-esteem is a product of socialization, consequence of various social interactions, positive social stimulation,

learning opportunities, care and support received from childhood through various developmental stages in the course of life. The diagnosis of leprosy becomes a blow to the identity of the individual and to his/her self-esteem. Self-acceptance and self-esteem are closely related, thus low self-acceptance due to disease cause low self-esteem (Sari & Erawati, 2018). Lack of emotional well-being among the leprosy affected people is quite common as they face number of negative, unpredictable, exit oriented life events as a consequence of the diseased status. These life-events are, leaving home, prolonged illness with poor prognosis, loss of jobs, loss of home, loss of support from family and friends, economic loss, breakdown of marriage, relationships etc. Each of these events become highly stress producing that often leads to depression, social withdrawal, self-confinement, rejection from others, leading to poor self-esteem. With the development of leprosy, the socially held belief like, leprosy is a curse of god, resultant of bad deeds of the last birth, result of sin, and such prejudices cause psychosocial problem among the leprosy affected persons (Singh, 2012). Low life satisfaction, depression, feeling of loneliness were found to be common among the leprosy affected persons even after being discharged from the hospital (Eyanoer, 2018). This also indicated a strong need for psychological rehabilitation along with other interventions (e,g. livelihood, housing, self-help initiatives) for the leprosy affected persons (Enwereji, 2011). Thus, leprosy itself is a major hindrance for development of self-esteem, self-worth and well-being in the course of life. The poor mental health conditions lead to poor hygiene practices, low economic engagements and living in impoverished conditions.

Opportunities of participation: Stigma leads to social consequence of restricted or non-participation of the leprosy affected persons. Leprosy contributes to a high social disease burden on affected population. The social burden includes specifically, restriction in social participation, emotional distress caused by feelings of shame, associated with imposed guilt with a feeling of being different. “It can be defined as ‘the coexistence of the following components: labelling, stereotyping, isolation, status loss and discrimination in a context where power is present” (Groot, Brakel, & Vries, 2011). Though leprosy control programmes have gained considerable success, yet, India alone accounts for 58.85% of global disease burden (Kumar, 2015). The feature

of participation restriction is not only a matter of stigma, prejudice, rather its implication in economic life is directly related to the ability to venture out for dignified job opportunities. Opportunities for education, adequate health care services other than leprosy related complications, entry in social gathering in temples or other religious institutions, and such social spaces become severely restricted. As common people tend to avoid contact with the leprosy affected persons the marginalization becomes a critical issue (Jung, et al., 2020) throughout the life course of the persons with leprosy and their family members.

Stigma is the prime cause of social disability that complicates the life of the leprosy affected persons and their community in addition to medical condition and creates layers of hindrances in medical and social rehabilitation. Social disability among leprosy affected persons and community is a major reason of suffering and deprivation which contribute towards subjugation that is extended and enlarged through the life span.

Background and methodological considerations: Even after intensive work for the rehabilitation and cure of the leprosy affected persons by Mahatma Gandhi, Mother Teresa and Baba Amte the problem is still quite prominent and intensive. Presently, many civil society organizations across the nation are working with leprosy affected communities. The India chapter of an international organization is committed for the main streaming of leprosy affected persons and their families through community based intervention