Stigma Of Leprosy Research Articles

Potential of SI WUWU ARENG GETHAK (Wuluhan shadow puppet art and GETHAK Mask Dance) as a preventive media to stop the stigma of adolescent Disabilities and Leprosy based on Pandalungan Local Wisdom

Disability is defined as the result of the interaction of individual limitations with their environment, not only physically and mentally but impacting activity limitations and barriers to participation. The purpose of writing is to find out the potential of the Si Wuwu Areng Gethak program as a preventive medium to stop the stigma of youth with disabilities and leprosy based on Pandalungan local wisdom. The writing method uses a literature review through electronic database literature and then synthesis is carried out according to the purpose of writing. adolescents with disabilities are more prone to experiencing cases of bullying by their peers, while those with leprosy have difficulties accessing health services because of shame and social isolation. The idea of the Si Wuwu Areng Gethak program is the utilization of Pandalungan Madura art as a preventive medium to stop the stigma of persons with disabilities, youth, and leprosy. The results of the SWOT analysis show that the percentage of driving force of 74.13% is sub-conducive to implementation. It is hoped that the idea of this program can be implemented through collaboration between academics and cross-sectoral synergy in education and health promotion

Leprosy in Post-elimination Era: A Study Conducted in Rural Tertiary Settings in North India.

Background Leprosy is an age-old disease caused by Mycobacterium leprae. The disease was declared eradicated in India in 2005. Many new cases are still being identified in the outdoor patient department. This study was undertaken to understand the epidemiological, clinical, and social aspects of leprosy among new patients, and assessthe current situation regarding caseload and presentation. Material and methods This study was designed as an observational study. It was carried out in people newly diagnosed with leprosyattending the outpatient department of Dermatology, Venereology, and Leprology in the tertiary care hospital in Uttar Pradesh University of Medical Sciences from July 2022 to January 2024. A total of 231 people afflicted with leprosy were included in the study. The data collected was statistically analyzed to identify demographic and social patterns, clinical presentations, and features associated with leprosy. Result Out of these 231 patients, 139 (60.17%) were male and 92 (39.83%) were female. Most cases belonged to the age group 40-59 years 87 (37.66%). History of close contact with an afflicted person was present in 34 (14.71%). Clinically, most patients belong to the borderline tuberculoid (BT) type. Only 24 (10.4%) patients were found positive for M. leprae by slit-skin smear examination. The ulnar nerve was the most common nerve involved in 63 (27.27%) cases. Trophic ulcers were the predominant deformity in 34 (14.7%), followed by foot drop in 13 (5.62 %). Conclusion The present study provides an overview of the prevailing trends of Leprosy within a specific region in the post-elimination era. The findings underscore the significance of the ongoing National Leprosy Eradication Program (NLEP) program and stress the importance of aligning them with the common goal of eliminating the burden and stigma of Leprosy from society.

Measuring leprosy case detection delay and associated factors in Indonesia: a community-based study

BackgroundLeprosy is a public health burden in Indonesia with a high number of new cases every year and a high proportion of disability among new cases. Case detection delay (CDD) can contribute to ongoing transmission and increased disability chances among leprosy patients. This study aimed to establish the CDD of leprosy and the factors associated with detection delay in Indonesia.MethodCommunity-based study with a cross-sectional design. Data were collected through interviews about sociodemographic and behavioral factors, anticipated stigma, and duration of CDD. Leprosy classification and case detection methods were obtained from health service records. A random sample was taken of 126 leprosy patients registered between 1st October 2020 and 31st March 2022 in the Tegal regency in the Central Java Province. Data were analysed by descriptive and analytical statistics using multiple linear regression.ResultsThe mean CDD, patient delay, and health system delay were 13.0 months, 9.7 months, and 3.2 months, respectively. Factors associated with longer CDD are younger age (below 35 years), male, found through passive case detection, and not having a family member with leprosy. Factors associated with longer patient delay were being younger (below 35 years), being male, not having a family member with leprosy, and anticipated stigma of leprosy. It was not possible to reliably identify factors associated with health system delay.ConclusionCDD in leprosy should be reduced in Indonesia. The Indonesian National Leprosy Control Program (NLCP) is advised to adopt an integrated intervention programme combining active case detection with targeted health education to reduce CDD and thereby preventing disabilities in people affected by leprosy.

The unbreakable journey: using photovoice to raise awareness and fight leprosy stigma in Papua, Indonesia.

In preparation of an ongoing trial to improve the treatment of leprosy (MetLep, clinicaltrials.gov: NCT05243654), we conducted a photovoice project among persons affected by leprosy in eastern Indonesia. Photovoice is a participatory visual method in which photographic images are used to explore community health and social issues among disadvantaged populations. This project generated opportunities to visualize stigma and misunderstandings people with leprosy face, and the social and mental burden that this puts on them and those around them.

Culture circle with community health workers about (lack of) knowledge and stigma of leprosy

RESUMO Objetivo: Descrever a construção sobre o (des)conhecimento e estigma da hanseníase pelos Agentes Comunitários de Saúde participantes do Círculo de Cultura. Método: Estudo qualitativo de tipo pesquisa-ação apoiado pelo referencial do Círculo de Cultura de Paulo Freire, realizado com 21 Agentes Comunitários de Saúde. Dados coletados em novembro de 2021, no município de São Luís, Maranhão. Foram evidenciadas as categorias conhecimento sobre a hanseníase; sinais e sintomas; estigma. Resultados: Os participantes possuíam conhecimento sobre a doença, mas verbalizaram a existência de desinformação das pessoas sobre a hanseníase, descrenças em relação à cura, além de situações de preconceito e estigma ainda presentes atualmente. Considerações finais: O círculo de cultura possibilitou o entrelace dos saberes científicos e empíricos na construção de um conhecimento crítico e reflexivo comprometido com o acolhimento e atenção integral às pessoas e famílias afetadas pela hanseníase.

Círculo de cultura com agentes comunitários de saúde sobre (des)conhecimentos e estigma da hanseníase

ABSTRACT Objective: To describe the construction aboutthe (lack of) knowledge and stigma of leprosy by Community Health Workers participating in the Culture Circle. Method: Qualitative, action-research type study supported by the Paulo Freire Culture Circle framework, carried out with 21 Community Health Workers. Data collected in November 2021, in the municipality of São Luís, Maranhão. The following categories were evidenced: knowledge about leprosy, signs and symptoms, stigma. Results: The participants had knowledge about the disease, but they verbalized people’s disinformation about leprosy, disbelief in relation to the cure, and situations of prejudice and stigma that are still present today. Final considerations: The culture circle enabled the intertwining of scientific and empirical knowledge in the construction of a critical and reflective knowledge committed to welcoming and comprehensive care for people and families affected by leprosy.

Leprosy Epidemiology According to Leprosy Type in 13 Teaching Hospitals in Indonesia between 2018 and 2020

BACKGROUND: Leprosy or Hansen’s disease is an infectious disease caused by Mycobacterium leprae (M. leprae) bacilli which results in chronic infections in humans that affect the peripheral nerves, skin, and other organs such as the eyes, mucous membranes, bones, and testicles. Leprosy has a variety of clinical presentations, depending on the cell-mediated immunity of the host. Leprosy is classified by the World Health Organization (WHO) as paucibacillary type (PB) and multibacillary type (MB) depending on the number of lesions. This multicenter study aims to provide representation of leprosy types and its epidemiology in Indonesia. AIM: The purpose of this study is to find out the epidemiology according to the leprosy type in 13 teaching hospitals in Indonesia between 2018 and 2020. METHODS: This is a descriptive study with cross-sectional design. All patients with the diagnosis of PB or MB type of leprosy who underwent Multidrug Therapy (MDT) treatment between 2018 and 2020 were included in this study. Data collection was carried out by tracing medical records data in 13 teaching hospitals in Indonesia. RESULTS: A total of 2129 leprosy patients were included in this study. There were 232 cases (10.8%) of PB leprosy and 1897 cases (89.1%) of MB leprosy. The average age of the patients is 38.7 years (SD ± 16.2 years). Males are more affected by leprosy (n = 1,441; 67.7%) compared to female (n = 688; 32.3%). CONCLUSION: Leprosy remains as a national health problem. The increasing cases of MB leprosy in Indonesia are caused by several factors including the lack of knowledge about leprosy, the delay in diagnosis of leprosy, and the stigma of leprosy within the community; therefore, it becomes a challenge to eliminate leprosy in Indonesia.

Leprosy stigma and its effect on the marriage experience of leprosy affected people and their descendants: the case of Addis-Tesfa Hiwot settlements in Ethiopia

Objective To describe how leprosy stigma affects the marriage experience of former leprosy patients and their descendants. Methods This qualitative study was conducted in settlements of leprosy-affected persons in Ethiopia and involved focus group discussions, in-depth interviews, key informant interviews, observations and desk reviews. Results Stigma was found to present an unbearable burden on the overall wellbeing of persons affected, particularly on their marriage life and the same for their children, due to stereotyping. Leprosy-affected persons face difficulties in finding a partner, being abandoned by their spouse, and being seen as a threat to the marriage prospects of other members of the family. As a result, affected persons are forced to leave their families and area of birth to live in settlements designated for them. Descendants also face stigmatization and marriage isolation in other communities where they live, if they are identified as the offspring of leprosy-affected parents, forcing them to marry mainly within their own community. Conclusion When someone is identified as a person affected by leprosy, they may fail to find a marriage partner or their marriage may come to an end; the marriage prospects of the whole family are put at risk. Concealing one’s background is often the ultimate result, but this presents a different and unique set of challenges and problems.

How do Americans perceive the stigma of leprosy?

ABSTRACT The stigma of leprosy will have reduced effects if people cannot reliably perceive it. Two factors impact these perceptions: familiarity and entitativity. One hundred and forty-five participants tested this assertion using an online platform to complete measures of stigma about leprosy as well as measures of familiarity and entitativity. The group of 145 completed the same measures of stigma, entitativity, and familiarity 1 week later. Standard deviations of time 1 and time 2 measures of stigma were used as indices of consistent (reliable) perceptions at the individual level. Results showed partial support for familiarity being positively associated with reliable responding. Moreover, high entitativity scores were associated with greater stigma perceptions at time 1 and time 2. Ongoing research on these indicators may be important in crafting future anti-stigma programs for leprosy.

Creating communities of care: Sex estimation and mobility histories of adolescents buried in the cemetery of St. Mary Magdalen leprosarium (Winchester, England)

ObjectivesThis study examines the biological sex and geographical origins of adolescents buried at the St Mary Magdalen leprosarium (Winchester, UK). The data are combined with archaeological and palaeopathological evidence to broaden the understanding of mobility and its relationship to leprosy and leprosaria in Medieval England.Materials and MethodsNineteen individuals (~10–25 at death) with skeletal lesions diagnostic of leprosy were analyzed using standard osteological methods. Amelogenin peptides were extracted from five individuals whose biological sex could not be assessed from macroscopic methods. Enamel samples were analyzed to produce 87Sr/86Sr and δ18O values to explore mobility histories.ResultsAmelogenin peptides revealed three males and two females. Tooth enamel samples provided an 87Sr/86Sr ratio range from 0.7084 to 0.7103 (mean 0.7090, ±0.0012, 2σ). δ18OP values show a wide range of 15.6‰–19.3‰ (mean 17.8 ± 1.6‰ 2σ), with corresponding δ18ODW values ranging from −9.7‰ to −4.1‰ (mean −6.3 ± 2.4‰ 2σ).DiscussionAmelogenin peptide data reveal the presence of adolescent females with bone changes of leprosy, making them the youngest confirmed females with leprosy in the archaeological record. Results also show at least 12 adolescents were local, and seven were from further afield, including outside Britain. Since St. Mary Magdalen was a leprosarium, it is possible that these people traveled there specifically for care. Archaeological and palaeopathological data support the notion that care was provided at this facility and that leprosy stigma, as we understand it today, may not have existed in this time and place.

Prevalence of Anxiety and Depression among People Living with Leprosy and its Relationship with Leprosy-Related Stigma.

Leprosy, a chronic infectious disease, is associated with a high risk of psychiatric disorders. We aim to estimate the prevalence of anxiety and depressive symptoms among people living with leprosy at a special community residence in Nepal. We also aimed to find the correlation between anxiety and depression. This is a cross-sectional descriptive study conducted in a community of people with leprosy staying at a centre in Nepal using all enumerative sampling. The semi-structured schedule, hospital anxiety and depression scale and stigma assessment and reduction of impact (SARI) stigma scale were applied among 119 participants. About 10.1% (n = 12) and 12.6% (n = 15) of participants scored above the threshold score indicative of definitive clinically significant anxiety and depression symptoms. In multivariable analysis, leprosy-related stigma and attribution of leprosy to bad deeds were significant correlates of anxiety; whereas leprosy-related stigma and duration of stay at the centre were significant correlates of depression. The prevalence of depression and anxiety symptoms among people living with leprosy is higher than that in the general population. Sigma is a significant correlation for both. It is important to screen for mental health issues while managing patients with leprosy and implement strategies aimed at leprosy-related stigma reduction.

Socio-medical perspectives on leprosy in Indian religions

Religion plays an important role in Indian culture, and greatly influences thinking and behavior around issues of hygiene and health. This study explored the religious texts of six major religions in India, and interviewed key informants, in order to identify religious precepts and proscriptions that may underlie current levels of stigma and social restrictions placed on people affected by leprosy. The study found a historical basis for leprosy stigma in the scriptures of all six religions. Attitudes are changing, especially with the acceptance of modern treatment. It is essential to incorporate stigma reduction perspectives in religious preaching.

A critical comparative ethnographic study of courtesy stigma in two leprosy-impacted communities in Indonesia

ABSTRACT Leprosy stigma is more neglected than the disease itself since global interventions towards leprosy are focused on the medicalisation of individual-sufferers and statistical counting of documented cases and less prioritising the impact of leprosy stigma towards society. This paper examines the impact of courtesy stigma on society through comparative ethnographic method conducted in two sites in East Java Province, Indonesia. Investigation in the first site, Mandangin Island, found that the island suffers underdevelopment of public facilities such as clinics and clean water and migration and medical knowledge bottlenecks. In the second site, Sumberglagah village, leprosy patients and the community they live with are also socially separated from the locals and they are engaged in controversial businesses exploiting the public fear of leprosy. This study finds that leprosy stigma in two leprosy-impacted communities in East Java, Indonesia, does not only isolate individuals but also a whole community from a bigger society regardless of whether all of the community members have leprosy. This study also detects problems related to leprosy education within the two impacted communities. It is suggested that efforts to address the problems require holistic approaches and commitments from various actors in the area in complement to existing global health missions.

Changing stigmatisation of leprosy: an exploratory, qualitative life course study in Western Nigeria

IntroductionRenewed interest in health-related stigma has invigorated calls to understand factors and processes underlying stigma. However, few empirical studies explore the influences of structural discrimination and moral status on leprosy-related...

The Quality of Life of Leprosy Patients in Dermatovenereology Polyclinic of Dr. Cipto Mangunkusumo Hospital Jakarta: Study on Social Stigma

Leprosy is a skin disease that has physical and psychosocial effects. Until now there are still many new cases of leprosy in Indonesia. Various causative factors include late diagnosis, patient not complaining about the illness, or similarities with other skin disorders. Eradication of leprosy is difficult especially due to the stigma of leprosy, both self and social, which can cause a decrease in quality of life. This study uses a mixed research design, quantitatively by filling in the Indonesian language DLQI questionnaire, followed by qualitative research through in-depth interviews with four subjects. Of the 40 subjects, the highest DLQI score range was between 11-20, which means that leprosy has a major influence on the subject’s life. Based on statistical tests, there was no significant association between DLQI scores and gender, age group, leprosy type, or occupation. The level of education has a statistically significant association with the DLQI score (p = 0.031). Based on in-depth interviews, leprosy was found to have an impact on subject’s education and work activities, as well as psychological effects due to the stigma caused. The use of instruments such as DLQI can quantitatively measure the quality of life of leprosy patients. In-depth interviews were conducted to assess psychological aspects that cannot be measured by using questionnaires. The data obtained can be used as a basis in giving counseling to leprosy patients

Community knowledge, attitude, and perceived stigma of leprosy amongst community members living in Dhanusha and Parsa districts of Southern Central Nepal.

BackgroundThough Nepal declared leprosy elimination in 2010, its burden is constantly rising in Terai communities for the past 2 years with 3000 new leprosy cases being diagnosed annually. Community’s perception is important for prevention and control of leprosy and enhancing quality of life of leprosy patients. Poor knowledge, unfavorable attitude and stigma create a hindrance to leprosy control. The main objective of this study was to assess the knowledge, attitude and stigma of leprosy amongst the community members living in Dhanusha and Parsa districts of Southern Central Nepal.MethodsA total of 423 individuals were interviewed using a structured questionnaire in Dhanusha and Parsa districts. Data was analyzed using both descriptive (frequency, percentage, median) and statistical inferences (Chi-square test, Kruskal Wallis H test, Mann Whitney U test, binary logistic regression) using SPSSvs20.ResultsAll respondents had heard about leprosy. Source of information on leprosy was mainly found to be health workers/hospitals (33.1%). Only 62.6% reported bacteria being its cause followed by other myths such as bad blood/curse/heredity/bad deeds (36%). Only 43.8% responded that leprosy is transmitted by prolonged close contact with leprosy patients and 25.7% reported religious rituals as the treatment. Only 42.1% had good knowledge and 40.9% had favorable attitude. Good knowledge of leprosy was highly associated with favorable attitude towards leprosy (P<0.001). The outcome variables- knowledge, attitude and EMIC score were found to have highly significant association with age, sex, ethnicity, religion, education and occupation of the respondents (P<0.001). Having knowledge on leprosy transmission was positively associated with favorable attitude towards leprosy (P<0.001).ConclusionsStrategizing the awareness programmes according to socio-demographic characteristics for enhancing the knowledge regarding leprosy cause, symptoms, transmission, prevention and treatment, can foster the positive community attitude towards leprosy affected persons. Enhancing positive attitude towards leprosy affected persons can reduce the community stigma, thus may increase their participation in the community. Positive attitude may further increase their early health seeking behaviour including their quality of life.

Factors Contributing to Leprosy Stigma among Madurese People

Leprosy is a disease that still has a stigma in society. Leprosy patients are considered have a curse from God, so they must be shunned, are incurable and are disinherited. This study aimed to identify the factors contributing to the leprosy stigma among the Madurese people in Indonesia. This was a descriptive analytical study with a cross-sectional approach that involved 107 adult people living around leprosy patients obtained through simple random sampling with other certain criteria. The variables measured were education, economic status, regulations and policies, cultural values and lifestyle, the family and social factor, the religious and philosophical factor, technology and leprosy stigma. The data was collected using a questionnaire and analyzed using the Spearman Rho test (α=0.05). The study revealed that education, economic level, regulations and policies, cultural values and lifestyle, the family and social factor, the religious and philosophical factor and also technology had a significant correlation with leprosy stigma (p=0.011; p=0.02; p=0.008; p=0.011; p=0.015; p=0.000; p=0.0037). It is expected for the government and health workers to conduct socialization and counseling focused on leprosy, therefore allowing people to be able to understand the disease, thus lowering the leprosy stigma.

Strengthen the Spiritual-Based Family Resilience to Overcome the Family Stigma of Leprosy

The high burden of stigma received by the family as a result of leper family members requires resources, support, and resilience so that the family will be able to perform its role in caring for the leper family members and reducing the stigma. The Spiritual based family is an important component of the value system and trust for family life in strengthening family resilience. This spiritual factor will be very influential on coping, support, family acceptance of leprosy patients and the process of treatment and family stigma.

Perceived stigma of leprosy among community members and health care providers in Lalitpur district of Nepal: A qualitative study.

BackgroundLeprosy remains a major stigmatizing condition. Stigma is a dynamic process resulting from the interaction between physical attributes caused by leprosy and the existing stereotypes in a community. Leprosy has pervasive impacts on all areas of life including psychosocial burden to an individual, social interaction, marriage, and employment. These impacts vary and are largely dependent on a particular culture and community. The main objective of this study was to explore the perceived stigma of leprosy amongst community members and health care providers in Lalitpur district of Nepal.MethodsA total of six focused group discussions (FGDs) with 43 participants from a community living close to Anandaban Leprosy Hospital and ten semi structured interviews (SSIs) with health care providers were conducted between October and December 2016. An interview guide was used for the FGDs and SSIs. All qualitative data were transcribed and translated into English and were thematically analyzed using Atlas.ti software.ResultsVisible deformities due to leprosy was one of the major contributing factors for stigma. Stigma was further exacerbated by an attitude to conceal the disease due to perceived fear of potential discrimination. While over the years, stigma was felt to be decreasing, various aspects of life were still affected by leprosy stigma including marriage, employment and social interaction. This was largely attributed to leprosy and its consequences, specifically the disability and deformity caused by leprosy.ConclusionLeprosy was still perceived to be feared and concealed because of potential discrimination, even within the community that was close to a long established leprosy hospital. Various aspects such as marriage, employment and social interaction were still affected by the stigma which was strongly associated with visible deformities. In addition to ongoing rehabilitation and stigma reduction programs, integrating strategies such as community engagement wherein community and leprosy affected person jointly take a role in stigma reduction programs can be helpful.

Stigma and leprosy presentations, Nepal

Objective: To explore the assumption of leprosy stigma as a major deterrent for early leprosy presentation in Nepal. Results: From 2015 onwards, the International Nepal Fellowship (INF) has carried out a research project about current leprosy delays within its working area, the West and the Mid-West Development Regions of Nepal. In one of the initiatives within the project, a total of 100 newly diagnosed leprosy cases from four areas were met with and interviewed at their place of treatment and/or in their communities. Eighty-one out of 99 participants (one reply missing) reported that they had not suspected leprosy before the diagnosis. Not having suspected leprosy, the leprosy stigma was something to grapple with after the diagnosis rather than before. Most did so by concealing the diagnosis. Others before them had done the same. Conclusions: In this sample, the direct influence of leprosy stigma upon delay in diagnosis was found to be marginal, as most participants had not suspected leprosy ahead of the diagnosis. Indirectly, however, there was and is an influence. Expectations and fear of the leprosy stigma cause those able to conceal the diagnosis to do so and those able to conceal are mainly those with less advanced signs and symptoms of the disease, the majority of present day patients in Nepal. And thus, the traditional image of leprosy as a disease of outstanding deformities is rarely challenged, which in turn means that most new patients do not suspect their condition to be leprosy. Had it been challenged, through better public awareness of the early signs of leprosy, for example, the health-seeking process is likely to have been different.