Leprosy-affected People Research Articles

Building the resilience of leprosy-affected people: lessons from Bangladesh

Building the resilience of leprosy-affected people: lessons from Bangladesh

Depression and mental wellbeing in people affected by leprosy in southern Nepal

ABSTRACT Background Leprosy, a leading cause of disability, remains endemic in southern Nepal. Alongside physical impairment and stigmatization, many people affected by leprosy suffer from mental health problems. Objectives This study had two objectives: (a) Establishing a baseline level of mental wellbeing and depression among people affected by leprosy in southern Nepal, and (b) Examining factors that influence mental wellbeing and depression in this target group. Methods A cross-sectional survey was conducted using three interview-administered questionnaires measuring level of depression (PHQ-9), mental wellbeing status (WEMWBS) and level of stigma (5-QSI-AP). Random clustering sampling was used to include leprosy-affected people from Self Help Groups (SHGs) and the reference group was matched based on socio-demographic characteristics. All participants were adults with no additional major morbidities. A sample of 142 persons affected by leprosy and 54 community controls were included. Results People affected by leprosy participating in SHGs had a significantly lower level of mental wellbeing and higher level of depression than the general population. Both mental wellbeing and depression were influenced by gender and the level of stigma. In addition, the level of depression was associated with the disability grade of leprosy-affected people. Conclusion Leprosy-affected people need mental health-care interventions at different organizational levels, with attention to identifying individuals at increased risk for mental health problems or with additional needs. These findings highlight the demand for further research on specific interventions to improve the mental health of leprosy-affected people.

Inequities towards leprosy-affected people: A challenge during COVID-19 pandemic.

Inequities towards leprosy-affected people: A challenge during COVID-19 pandemic.

Excess of deaths of leprosy-affected people

Excess of deaths of leprosy-affected people

Community stigma and desired social distance towards people affected by leprosy in Chandauli District, India

Objective: To collect baseline data on community stigma against leprosy and leprosy-related knowledge and ideas, with a view to develop contextualised community education and stigma reduction interventions. The data will also be used to evaluate subsequent stigma-reducing interventions. Methods: Community members (n = 371) in Chandauli District, India, were interviewed, using a knowledge questionnaire, the EMIC Community Stigma Scale (EMIC-CSS) and Social Distance Scale (SDS). In the latter two scales, a higher sum score indicates a higher level of stigmatizing and negative attitudes of community members towards leprosy-affected people. Linear and quantile regression analyses were applied to explore the relation between (sociodemographic) covariates and the level of negative attitudes. Results: Community members indicated that avoidance of people affected by leprosy, problems with (prospective) marital life, concealment, and shame and embarrassment are present. Linear regression showed that knowing people affected by leprosy and being a government employee significantly increased ones mean EMIC-CSS score, whereas a higher level of education significantly decreased this. Additionally, community members reported a desire to create social distance between people affected by leprosy and their children. Quantile regression showed that increased leprosy-specific knowledge and religion were associated with significantly decreased SDS scores, whilst housewives had significantly increased SDS scores. Knowledge was poorest regarding the transmission and cause of leprosy: only 8.1% and 10.5% knew the correct route of transmission and cause of leprosy. Conclusion: The level of negative attitudes of the community towards leprosy is high in Chandauli District, which may affect many aspects of the lives of people affected by leprosy. Community members knew least about the transmission and cause of leprosy and these domains should, therefore, be considered when designing stigma-decreasing interventions.

Armadillos and leprosy: from infection to biological model.

ABSTRACT Mycobacterium leprae is the primary causative agent of Hansen’s disease or leprosy. Besides human beings, natural infection has been described in animals such as mangabey monkeys and armadillos. Leprosy is considered a global health problem and its complete pathogenesis is still unknown. As M. leprae does not grow in artificial media, armadillos have become the primary experimental model for leprosy, mimicking human disease including involvement of the peripheral nervous system. Leprosy transmission occurs through continuous and close contact of susceptible people with untreated infected people. However, unknown leprosy contact has been reported in leprosy-affected people, and contact with armadillos is a risk factor for leprosy. In the USA, leprosy is considered a zoonosis and this classification has recently been accepted in Brazil. This review presents information regarding the role of wild armadillos as a source of M. leprae for human infections, as well as the pathogenesis of leprosy.

The differences in leprosy-related stigma between 30 sub-districts in Cirebon District, Indonesia

Objective: Leprosy-related stigma varies in intensity in different contexts, yet it seems that no research has been conducted on the differences in the level of stigma within a specific area at geographical level. The aim of this study is to determine differences in leprosy-related stigma between 30 sub-districts in Cirebon District. Methods: Data were retrieved from the SARI Project. Two stigma assessment tools were used for leprosy-affected people (P-scale and SSS) and two for unaffected people (EMIC-CSS and SDS). Differences in median scores were analysed using a Kruskal-Wallis H test, and maps of the median scores per sub-district were created. Results: Significant differences were found between specific sub-districts in the EMIC-CSS, P-scale and SSS-scores. The highest median scores of stigma scores for both affected and unaffected participants were reported in the sub-district Waled (SSS: 29·9, P-scale: 19·5, EMIC-CSS: 19·2, SDS: 13·2), but participants from Astanajapura scored higher on the EMIC-CSS (19·7). Low median scores were found in Weru (respectively 7·7, 4·9, 7·0, 7·3). Furthermore, stigma scores in Eastern subdistricts were significantly higher than in Western sub-districts ( p < 0·001). Conclusions: This study showed significant differences in leprosy-related stigma between East and West Cirebon, and various sub-districts. The data from the different instruments used showed a strong concordance. More research is needed to examine the underlying mechanisms for the differences in Cirebon District and to identify differences in other areas. The findings of this study are relevant for policymakers, health service managers and researchers.

Humanitarian quarantine in practice: medicine, religion and leprosy in New Caledonia

ABSTRACTMedicine and religion worked in close synchronisation during the leprosy outbreak of New Caledonia (1890–1950). Once isolation of leprosy-affected people became mandatory doctors and missionaries came together to promote a particular form of medical practice that tied charitable zeal with cutting-edge medical research, developing a sophisticated set of medical practices that catered for the soul as well as the body. Such practices went hand-in-hand with ideas developed by doctors in the earlier stages of the epidemic about the way in which the disease had entered the Kanak (local Melanesian) population. Doctors and missionaries admitted that immoral colonial channels had upset the delicate balance of local social and biological rhythms. Yet they also believed that the highly contagious nature of the outbreak was linked to the inferior state of Kanak. This paper aims to highlight the way in which the leprosaria system in New Caledonia represented a double-edged moral high-ground within the French medical colonial narrative. It tracks the complex way in which emotionally charged arguments about contagion, science and spirituality constructed an ideology of humanitarian quarantine which was used to justify a highly aggressive form of medical biocontrol.

Impact of socio-economic development, contact and peer counselling on stigma against persons affected by leprosy in Cirebon, Indonesia – a randomised controlled trial

People affected by leprosy are often stigmatised, but stigma is rarely quantified and the effectiveness of interventions is often not evaluated. The SARI Project aimed to test and evaluate three interventions: counselling (involving peer counsellors), socio-economic development (SED) and contact between community members and affected people. This study used a controlled trial design in which pairs of the stigma-reduction interventions were randomly allocated to sub-districts in Cirebon District,Indonesia. The study sample consisted of one cohort of people affected by leprosy (on treatment or treated) and two independent samples of community members. The latter were selected through purposive sampling. Three scales (e.g. SARI Stigma Scale, Participation scale) were applied among leprosy-affected people and two scales (e.g. Social Distance Scale) were used among community members pre- and post-intervention. Among affected people (n=237), significant differences in reduction of stigma and participation restrictions were found in all intervention areas and an improvement in quality of life in some intervention areas. Social distance and social stigma significantly reduced among community members (n=213 and 375) in the two intervention areas where the contact intervention was implemented. Two of the five instruments indicated changes in the control area, but the changes in the intervention areas were much larger. The SARI Project has demonstrated that a measurable reduction in leprosy-related stigma can be achieved, both at community level and among people affected by leprosy, using reproducible interventions that can be adapted to different settings and target groups.

Disability, Leprosy, and Kanak Identity in Twentieth-Century New Caledonia

The article examines the striking role played by the Indigenous (Kanak) leprosy-affected people in the history of the French overseas territory of New Caledonia. The so-called leprosy crisis in colonial New Caledonia spanned 1890–1950 and provoked alarm among medical and government officials both within the territory and back in Paris. Beginning in 1911, authorities introduced strict medical protocols in Kanak communities in stark contrast to those for Europeans, including enforced isolation and compulsory clinical diagnosis. These policies continued until the 1950s and were also in place at the last leprosarium in the territory, the Sanatorium de Ducos. Such protocols, implemented under French medical supervision, were closely aligned with the French administrative process of internment, connected to the code de l’indigenat, which confined Kanak in an attempt to control them. Indeed, I argue that the enforcement of the indigenat between 1925 and 1950 depended on the medicalized able-bodied discourse atta...

Social Identity of Leprosy-Affected People in Puducherry Region: A Qualitative Study

Leprosy is a least communicable disease affecting the human race. It can result in disability and impairments though can be prevented and treated effectively when diagnosed on time. It imposes constraint on the day to day activities and social participation of the affected persons. The result of disease stigma had furthered to the problem of social exclusion. Despite efficient treatments and considerable public awareness the stigma associated with the disease stands as a major issue in many societies. With social pressures such as poverty, illiteracy and unequal allotment of medical resources, the sufferers of leprosy experience increased social inequity. Leprosy had not only affected the physical condition but the status and roles of the individuals were also compromised in many ways. The disability resulting from the disease also declines the economic production of the affected individuals. Hence, the social factors attached with leprosy are studied in order to understand the status and identities of the sufferers. From literature survey on leprosy, it is understood that in spite of several programs and researches being done on the aspect of prevention and rehabilitation of the leprosy-affected people, there are very few studies carried out on the socio-cultural aspect of the community affected with leprosy. There are a number of people with leprosy and its social consequences living in Puducherry; a study on the social implications as a result of leprosy in a qualitative way is hence necessary. A qualitative study with observation and semi-structured interviews is carried out from the leprosy-affected individuals and families, in generating their case studies regarding their roles and status within family and society. Secondary sources were referred simultaneously.

Rehabilitation of leprosy-affected people: An overview

Leprosy is mainly a disease of the skin and nerves. The involvement of nerves may lead to impairments that have, contributed to the fact that leprosy is often still seen as a disease to be feared. In non–leprosy-endemic Western countries, beliefs continue to prevail about the inevitability of deformities and the lack of a cure. I review the pathogenesis of deformity and to present a discourse on how deformities can, to a very large extent, be prevented and corrected.

Operational cost for management of leprosy-related complicated ulcer in charitable hospitals

Leprosy causes skin lesion and nerve damage which can ultimately progress to secondary impairments of the eyes, hands and feet. The most important aspect of nerve damage is the sensory dysfunction which can lead to insensitivity and a predisposition to the development of ulcers. Plantar ulceration is the single most common cause of morbidity among leprosy-affected people. Ulcers also pose a significant problem to health services as the treatment and rehabilitation of patients with ulcers is extremely demanding on the health care budget. Standard wound therapy for complicated ulcers extends, on average, through 30 days of conventional treatment. Within that time most will heal given adequate treatment. The paucity of data on the operating costs of ulcer management in in-patient settings also applies to the unit costs of various services provided in ulcer management for leprosy patients. Charitable hospitals have played a vital role all through the history of leprosy control in India. One of the major tasks undertaken by them is running referral care centres to manage simple and complicated ulcers. Even in the post-integration phase, specialised services offered by such hospitals remain relevant. Given the prevailing fund constraints, therefore, obtaining financial estimates for ulcer care management would be useful. Such estimates would yield more precise information for decision-makers who could then allocate financial resources efficiently. The main objective of our study was to estimate the operational costs involved in the in-patient treatment of leprosy-related complicated ulcers.

Leprosy, philanthropy and social capital in New Zealand/Pacific relations 1950s–1960s

Abstract Focusing on the 1950s and 1960s, this article is concerned with the role of the Lepers’ Trust Board and its most famous representative, P. J. Twomey, in the formation of unofficial voluntary and philanthropic relationships between the people of New Zealand and the South Pacific. The origins of the Lepers’ Trust Board lie in the charitable outreach of Benjamin Pratt and Pat Twomey to the leprosy patients isolated on Quail Island in Lyttleton Harbour, New Zealand. On Pratt’s death, Twomey continued the work initiated in the 1920s and became known throughout New Zealand and the South Pacific as the ‘Leper Man’. This article draws on the theory of social capital to help explain the diversity and dynamic of philanthropic networks linking the Lepers’ Trust Board in Christchurch, New Zealand, to the leprosy sufferers of the South Pacific. It foregrounds the importance of the marginalized and isolated leprosy communities in providing an ethical and emotional focus for the forging of personal relationships between peoples of New Zealand and the Pacific islands. This article contributes new research and interpretive insights into the history of welfare in New Zealand, arguing that the fundraising activities and donor response to Twomey, and the leprosy-affected people of the South Pacific, became a means of developing a micro-economy of personally and financially invested intra-Pacific networks.

Putting Indian Christianities into Context: Biographies of Christian Conversion in a Leprosy Colony

AbstractGandhian andHindutva-inspired discourses around conversions to Christianity in India over-simplify the historical nexus of relations between missionaries, converts and the colonial state. Challenging the view that conversions were ever only about material gain, this paper draws on long-term ethnographic fieldwork with leprosy-affected people in South India to consider the role that conversion has also played in establishing alternative, often positively construed, identities for those who came to live in leprosy colonies from the mid twentieth century onwards. The paper draws out the distinctive values associated with a Christian identity in India, exploring local Christianities as sets of practices through which, for example, a positive sense of belonging might be established for those otherwise excluded, rather than being centred upon personal faith and theologyper se. Biographical accounts are drawn upon to document and analyse some of the on-the-ground realities, and the different implications—depending on one's wider social positioning—of converting from Hinduism to Christianity in South India.

Reliability of Clinical Nerve Function Assessment in Peripheral Neuropathies

Sensory and/or motor nerve function impairment as a consequence of neuropathy is often assessed using electroneurophysiological tests. However, in low-resource countries where the required equipment is rarely available, manual muscle strength testing (MMST) and monofilament testing (MFT) offer very reliable alternatives. In six leprosy programmes in four Asian countries, a multi-centre randomised clinical trial (RCT) was carried out to assess the effect of corticosteroids on neuropathy in leprosy-affected people. The sensory and motor nerve function was tested using MMST and MFT, including new test sites for the sural and radial cutaneous nerves (MFT) and the posterior tibial and common peroneal nerves (MMST). The reliability studies of the MMST and MFT tests of the TENLEP (Treatment of Early Neuropathy in LEProsy) trials are presented here. Two assessors in each centre independently used the MFT and MMST in 30 leprosy-affected people. Reliability is good to very good for MFT in nearly all nerves. MMST also shows good to very good agreement, with a few exceptions. Our study confirms that MMST and MFT can be performed reliably, and that the new tests also have acceptable reliability.

Self-care groups of leprosy-affected people in Mozambique

In 2011, the national leprosy control programme in Mozambique decided to promote the setting up of self-care groups (SCGs) for prevention and care of disabilities. To present an overview of the national SCG strategy and to understand the perceptions of people with leprosy regarding the benefits and challenges of participating in the SCGs in Mozambique. Semi-structured group interviews were carried out with 22 SCGs involving 299 leprosy affected people in Nampula and Manica provinces. SCGs are involved in different activities and do not limit themselves to activities related to disability care. The majority of respondents expressed satisfaction about their participation in SCGs. Apart from perceived benefits in relation to their disabilities, the majority of SCG members also reported benefits in social participation. Lack of training, insufficient resources for income generation and long distances were the major challenges for SCGs, especially in the Manica province. People affected with leprosy perceive SCGs as useful in self-care for prevention of disabilities and social participation.

Enhancing counselling strategies for leprosy patients through the Participation Scale

Counsellors provide psychological support, appropriate education and coping skills to persons affected by adverse events. Counselling of leprosy patients is essential to enable them to cope with perceived stigma as well as managing severe enacted stigma at home, place of work or elsewhere. Professional counselling was instituted at the Leprosy Mission Community Hospital in Naini, Allahabad District, India, in 2004. In this paper we describe how the use of the Participation Scale helped in developing Counselling strategies for a variety of leprosy patients. A random sample of 250 leprosy patients visiting the hospital for the first time during 2011-2012 were chosen, 50 each from those with only hidden patches (Grade 0a), patients with visible patches (Grade 0b), those with only anaesthesia or weakness (Grade I), patients with paralytic deformities (Grade 2a), and patients with visible disabilities and ulcers Grade 2b). The P-scale consisting of 18 items was administered in the local language (Hindi) and used by the Counsellor along with relevant clinical and socioeconomic details. There were 84 women and 166 men, distributed in all the five categories. Overall, 142 patients out of 250 (56.8%) had no participation restrictions; 39 (15.6%) had mild social restrictions; 20 (8.0%) had moderate, 28 (11.2%) had severe and 21 (84%) had extreme participation restrictions. Paradoxically, there were some cases without severe deformity who are also subjected to restrictions. Patients in Grades 0a and 0b, had practically no severe or even moderate restrictions in their social participation, but their perceived stigma was high, requiring suitable leprosy education, family counselling and coping skills to feel confident that they were capable of normal work like any of their peers. Counselling became more intensive in Grade 1 and for almost all in Grade 2, who experienced moderate to severe restrictions in meeting new people, participating in social activities and indulging in socioeconomic activities. Counselling for such groups of patients required multiple approaches, including in-depth leprosy education for regular treatment, self-care measures, mobilisation of coping skills, self-confidence and acceptance counselling, and follow-up counselling for thos released from treatment after multidrug therapy. The P-scale provides essential information to enable a Counsellor to offer more meaningful and balanced counselling to leprosy-affected people, especially in coping with enacted stigma. Education oriented counselling and psychological supportive counselling are necessary adjuncts for clinical care and treatment. Client-oriented counselling allows clients to freely express their fears and anxieties, and promotes coping skills and confidence.

The concurrent validity of the Amharic version of Screening of Activity Limitation and Safety Awareness (SALSA) in persons affected by leprosy

Leprosy is endemic in many countries and results in activity limitations. There is a need for assessment tools to guide professionals in their evaluation and choice of intervention in order to improve conditions for leprosy-affected people. The purpose of our study was to evaluate the concurrent validity of the Amharic version of Screening of Activity Limitation and Safety Awareness (SALSA-am) scale with Amharic version of Disability of the Arm, Shoulder and Hand (DASH-am) questionnaire. Thirty-eight individuals with nerve damage due to leprosy completed the SALSA-am and DASH-am questionnaires. Spearman's rank correlation was used to determine relationships between SALSA and DASH scores. Specificity, sensitivity and accuracy were calculated. There was a good correlation 0.87 (P < 0.001) between SALSA-am and DASH-am scores. Sensitivity, specificity and accuracy were calculated with acceptable results. SALSA-am is considered a useful questionnaire for determining activity limitations in persons affected by leprosy, and showed good correlation with DASH-am. The concurrent validity was considered good.

Restless legs syndrome in people affected by leprosy

Restless legs syndrome (RLS) is one of the most commonly encountered sleep disorders. The prevalence of RLS and its association'with leprosy have not previously been elucidated. The aims of this study were to investigate the prevalence of RLS in people affected by leprosy and to determine the presence and amount of sleep disruption in leprosy affected people with RLS. Each leprosy-affected person was matched to two healthy controls for age and sex. A total of 236 leprosy-affected people who lived in Sorokdo and 472 healthy control subjects who lived in Namwon were included in this study. A diagnosis of RLS and a severity assessment were made using the criteria described by the International Restless Legs Syndrome Study Group. The prevalence of RLS was significantly higher in people affected by leprosy (60/236; 25.4%) than in controls (42/472; 8.8%). Pittsburgh Sleep Quality Index (PSQI) global score was higher in leprosy-affected people than in controls. No significant difference was found between leprosy-affected people and controls with regard to the severity of RLS. Leprosy-affected people with RLS had a poorer sleep quality (higher PSQI global score) than those without RLS, but the Geriatric Depression Scale was not different between leprosy-affected people with RLS and those without RLS. The frequency of RLS among leprosy-affected people was significantly higher than that of RLS in the general population. Leprosy-affected people should be examined for RLS and treatment for RLS can potentially improve sleep.