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Objectives: The purpose of this study was to assess the stigma situation in Hansen’s disease from the perspective of both people affected by Hansen’s disease and those living in the surrounding community in southeast Nigeria., Design: A cross-sectional survey was conducted among affected people and non-affected people using the xplanatory model interview catalogue stigma scale for the community adjusted for leprosy and for leprosy patients, internalised stigma of mental illness scale adjusted for leprosy, Participation Scale and the Social distance scale. Data obtained were analysed using descriptive statistics of frequency, distribution tables, mean and standard deviation as well as inferential statistics of Mann-Whitney U test, Kruskal-Wallis H test and Spearman rho correlation rank. A total of 434 participants including 63 affected people and 371 community members all within the age range of 12 – 89 years participated in this study., Result: The perception of stigmatisation was higher in single participants, female participants, cooks, traders, crafts people and participants with primary and secondary school certificates, while beggars recorded the least perception of stigmatisation. The outcome of this study showed that females living in the community had a higher tendency of keeping a social distance than males. It also showed that on average, severe participation restrictions were found among people with WHO disability Grade II, traders, males, beggars, married people and those without any formal education while crafts people did not have significant participation restrictions., Conclusion: There is an urgent need to intensify the stigma reduction strategies and the necessary rehabilitation support. A standardised instrument should be developed to monitor the efficiency of such programmes.

Background: There is a need for comprehensive, valid and reliable instruments to assess leprosy-related stigma. This paper presents the process of the cross-cultural validation of an instrument in Cirebon District, Indonesia initiated by the Stigma Assessment and Reduction of Impact (SARI) project., Methods: The Berger Scale was initially developed to assess HIV/AIDS-related stigma. This study explores the conceptual, item, semantic, operational and measurement equivalence of this scale for leprosy. The process included a qualitative study, translation and back-translation, training of interviewers, a pilot and the main data collection. We aimed for a sample of 154 people affected by leprosy with 60 repeat interviews. They were selected through convenience sampling., Results: The original scale showed acceptable conceptual equivalence, but insufficient item, semantic and operational equivalences. For instance, there were irrelevant HIV-related items and the respondents found it difficult to indicate their level of agreement with the given statements. Major adjustments were necessary, leading to a new version of the scale. The measurement properties of the new version showed good internal consistency (Cronbach’s alpha 0·88); no floor or ceiling effects; and a good reliability (intra-class correlation coefficient 0·75).

Introduction: Leprosy remains a serious public health problem due to its ability to cause disability. The prevention of leprosy ultimately lies in the early diagnosis and treatment of the individuals having leprosy, thereby preventing further transmission. In Sri Lanka, 46% of new cases identified in year 2013, were late presentations and this caused to 7-8% patients to present with deformities. It has been observed that lack of awareness among health staff has contributed to this late diagnosis., Objective: To describe knowledge, attitudes and practices towards leprosy amongst public health care workers in Colombo Municipal Council area, Sri Lanka., Material and Methods: A descriptive cross sectional survey was carried out in Colombo Municipal Council area by distributing self administered questionnaire among all public healthcare workers (n=178) from January to February, 2015., Results: Hundred and fifty three participants (86%) identified ‘hypo pigmented patches’, 64 (36%) identified ‘skin nodules’ and 36 (20%) identified ‘thickened nerves’ as suspicious sings of leprosy. More than one fifth of participants believed leprosy is easily transmitted by touch. Sixty one (34.3%) health care workers were scared of leprosy and 77 (43.3%) didn’t want to reveal to a friend that if a family member gets leprosy. Another 49 (27.5%) didn’t want to share materials with a patient. A significant minority (22.5%) believed that patients should be kept apart from others., Conclusion: Including leprosy in continuous medical education and refresher training is crucial in early diagnosis of leprosy as certain gap in knowledge was identified. An emphasis needs to be placed on education regarding transmission and low rate of infectivity of leprosy as study revealed certain misconceptions and prejudices still exist even among healthcare workers.

Introduction: Leprosy, a chronic infectious disease, poses a serious public health concern due to its impact on the wellbeing of affected people. This study, which was set in Ghana, explored stigmatisation and discrimination experiences of people affected by leprosy resident at the Weija Leprosarium in Accra., Methodology: Using a qualitative research methodology, 26 participants were purposively selected and in-depth interviews conducted. The interviews were audio-recorded, transcribed, and categorised based on the objectives of the study., Findings: The findings revealed that participants experienced stigma and discrimination from their families, friends, healthcare providers and community members. Evidence showed that whereas some participants anticipated stigma and discrimination from prospective employers, others internalised the negative beliefs associated with the disease and gave up searching for jobs. Moreover, the findings indicated that participants were not willing to reintegrate into their communities since they considered the Leprosarium a safe haven., Conclusion: Based on the findings of the study, we conclude that people affected by leprosy included in this study experienced stigmatisation and discrimination. We therefore suggest that efforts aimed at reducing and in the long run curing the stigma of leprosy must be contextualised and scaled up. Also, implications are discussed for social work and public health practices.

Objectives: 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., Results: 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., Conclusion: 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.

Unlabelled: Leprosy is a complex and multi-faceted disease responsible for significant disability in several endemic countries. Physical impairments caused by leprosy are often amplified by local sociocultural phenomena in many parts of the world. In Nepal, sociocultural phenomena such as stigmatisation and health beliefs affecting treatment compliance and health seeking behaviours are known to play an important role in the acquisition of disability. Foot-ulceration is reported to be a common sequelae of leprosy, however, presently little research has been published investigating the potential influence of patient beliefs on management of foot ulceration in leprosy affected persons., Objective: In light of this we conducted an exploratory qualitative study to investigate the health beliefs held by patients with foot ulceration at a Leprosy hospital in Nepal., Methods: A mixture of open-ended interviews (n = 21), three focus groups and a series of field observations were used to explore the explanatory models of foot ulceration thought to be used by leprosy affected people to understand and explain this specific comorbidity., Results: Our findings indicated that a wide range of health beliefs were present in our sample, many of which lie outside of the biomedical understanding of illness. This included a range of non-biomedical beliefs regarding wounds and widespread application of the traditional 'hot-cold' model of illness used to explain foot ulceration., Discussion: The findings of this study appear to suggest many beliefs held by leprosy affected persons concerning foot ulceration are highly complex, with some expressed beliefs potentially having a negative impact on self-management of ulceration.

This study aims to apply the protocol of psychological assessment (PAP) and the SRQ-20 to analyse the psychological profile of 130 leprosy patients, in order to evaluate the incidence of Common Mental Disorders (CMD), and screen patients with higher risk of psychological distress. The following results were found in the PAP: 31.53%, 23.8% and 16.9% reported an unsatisfactory childhood, adolescence and adulthood, respectively; 31.53% are afraid of being discriminated against and 16.9% experienced discrimination. Also, 13.07% reported drastic life changes due to leprosy; 29.23% have low self-esteem, 31.53% have real fear and 22.3% have phantasmal fear. In the SRQ-20, the prevalence of CMDs was 32.3%, with the majority being female, married, with low education (primary education), low self-esteem, and with a drastic change in life. Conclusion: This is one of the few studies on the psychological profile of leprosy patients demonstrating the importance of the application of investigative technologies in psychopathological screening, aiming on adherence to treatment and psychotherapy planning. Furthermore, it provides support for reflection on the integrality of healthcare for leprosy patients and the importance of psychologists in health teams.

Objectives: To explore the patient experience of being diagnosed with leprosy and the support provided during this process in selected populations in Brazil. To understand the information needs of patients during diagnosis. To identify characteristics of patients with different diagnostic experiences. To add to the evidence base used for improving the diagnostic process for leprosy patients., Design: A self-constructed questionnaire delivered to 116 participants, at three leprosy health centres, across three states in Brazil., Results: Most participants felt under-informed during diagnosis; 68.1% wanted more information about leprosy. Nearly one-quarter of patients reported feeling unable to ask questions at diagnosis. Almost half of patients reported being worried about treatment, yet 43.3% reported not having the chance to talk about their concerns. Younger participants were significantly more likely to report feeling unable to ask questions and talk about their worries. The majority of participants (59.5%) reported not being given any written information to take away with them. 36.5% reported not being given advice about how to reduce the chance of other family members becoming ill with leprosy. Older males were most likely to be given this advice despite females being in most contact with family members in most cultures., Conclusions: It is recommended that patients are encouraged to ask questions and invited to talk about their concerns, particularly younger patients. It is recommended that a simple information leaflet be provided to all patients. These suggestions may require some financial input, more staff and longer consultations but should significantly improve the diagnostic process.

Objective: Counselling has been identified as a promising strategy to reduce stigma. Lay and peer counsellors have provided counselling in various fields, but this has not yet been studied in the field of leprosy. The Stigma Assessment and Reduction of Impact (SARI) project in Cirebon District, Indonesia took up this endeavour. This paper describes the initial experiences based on the perspectives of the lay and peer counsellors and aims to provide lessons learnt for future initiatives., Methods: The selection of lay and peer counsellors was based upon pre-defined criteria such as completed junior high school and level of confidence. This study draws on the notes of seven monitoring and evaluation meetings and 21 group discussions the main researcher facilitated with the lay and peer counsellors and the notes written by the lay and peer counsellors on the sessions with their clients., Results: In total, 198 people affected by leprosy were offered counselling by the 11 lay and 12 peer counsellors; 145 accepted this offer. The other 53 either did not need counselling or did not want to participate for example due to worries about disclosure. Effective communication skills such as listening and asking effective questions were important, but also difficult to acquire for the lay and peer counsellors. Sharing personal experiences was highly appreciated by clients and stimulated a deepened reflection., Conclusion: Challenges related to concealment and effective skills exist, but some people affected by leprosy and others can become effective counsellors making it at the outset a challenging but nevertheless promising intervention.

Objectives: To study the clinical profile of leprosy patients; to assess dehabilitation in leprosy patients and to study the factors affecting dehabilitation., Design: A cross-sectional questionnaire-based study was carried out on 100 leprosy patients visiting the All India Institute of Medical Sciences (AIIMS), New Delhi between February 2009 and February 2010. Demographic and clinical data were collected and subjects were administered the 52-item Anandaraj Dehabilitation scale which measures the negative impact of leprosy on family relationships, vocational condition, social interaction and self-esteem., Results: The mean patient age was 30.9 years, 81% were males, 51% were at the lepromatous end of the spectrum, 87% had multibacillary leprosy, 22% each had Type 1 and Type 2 reactions, 22% had Grade 1 disability and 39% had Grade 2 disability. The mean duration of symptoms before diagnosis was 20 months. On the Anandaraj scale, 23% had high levels of dehabilitation; on an average, scores were in the range of medium level dehabilitation. Nearly 80% of patients avoided meeting friends, one-third hid the diagnosis from their families and worried about losing their jobs due to the disease, while around a quarter avoided sexual relations, used separate utensils and avoided touching children. Over 40% of unmarried patients faced matrimonial difficulty due to leprosy. Anxiety and guilt were common and incidence of suicidal ideas was much higher than the lifetime incidence in general population. Lack of education, Type 2 reactions, Grade 2 disability and lower age were predictors of greater dehabilitation., Conclusions: Dehabilitation of leprosy patients continues in this post-elimination era of rehabilitation. A large segment of preventable disability and resultant dehabilitation is likely being missed. There is an urgent need for corrective and preventive measures.

Background: Health professionals at all levels gradually recognise the impact of stigma on case detection and treatment of various health conditions such as leprosy and tuberculosis. These diseases are identified as chronic diseases which are prone to stigmatisation., Purpose: To assess the perception of community members towards stigma related to leprosy and tuberculosis, in order to verify and compare the existence of stigma towards these two diseases in the community, and to provide baseline data for the evaluation of future de-stigmatising interventions., Methods: This study was done in four sub-districts of Chaiyaphum province. Community members were interviewed using the EMIC stigma scale. Frequency was used to identify the percentage of community members who perceived stigma. A T-test was applied to compare the mean EMIC scores of community members between leprosy and tuberculosis. A P-value of < 0.05 was considered indicative of a statistically significant difference or association., Results: It was found that community members perceived that people affected by leprosy or tuberculosis were stigmatised by the community. However, community members perceived more stigma towards leprosy than towards tuberculosis, particularly in terms of shame, embarrassment, and problems in getting married. The difference was highly significant (P = 0.001, paired t-test)., Conclusion: The community's perceived stigma against people affected by either leprosy or tuberculosis may affect many aspects of their lives. The authors recommend use of strategically targeted de-stigmatising interventions that take local attitudes and perceptions into consideration.

Unlabelled: Summary To maximise successful completion of multi-drug therapy (MDT) and optimise treatment outcomes for people with leprosy, it is vital to understand the relative importance of perceived factors which prevent them from completing the required number of doses in time., Objective: To explore personal, family, social, community, attitudinal, practical, geographical, cultural and traditional factors which may influence adherence to treatment, a two-phase study was undertaken comprising issue identification via focus groups, and a ranking exercise via individual interview., Study Design: The perspectives of 895 respondents (320 people affected by leprosy who were not able to complete treatment, 302 of their 'operational heads of family', and 273 of their nearby community members) across four states of India namely i.e. Andhra Pradesh (Salur), Chhattisgarh (Chandkhuri), Maharashtra (Kothara) and Uttar Pradesh (Barabanki) were collected, using a checklist interview method., Results: Findings suggest that seeing positive changes in their symptoms as well as not seeing improvement can lead to non-completion of MDT. Problems with scheduling and travel expenses were also key issues. Better management of the expectations of people affected by leprosy and reducing the burden of treatment may be important strategies. The importance of stigma and poverty were noted through a number of issues, none of which were particularly highly ranked., Conclusions: The nature and diversity of perceived issues identified across respondent type and particularly region, suggest that the determinants of adherence are complex and multi-factorial. More community based approaches with greater coordination at the community level are recommended.

Objective: To describe the profile of patients who participated in the Randomised Clinical Trial for Uniform Multidrug Therapy for Leprosy Patients in Brazil (U-MDT/CT-BR) and determine the level of satisfaction with a uniform therapy regimen, especially among paucibacillary patients., Design: This is a descriptive cross-sectional epidemiologic study nested in the wider U-MDT/CT-BR. The study was conducted using a convenience sample composed of patients from the Dona Libânia Dermatology Centre in Fortaleza, Ceará and from the Alfredo da Matta Foundation in Manaus, Amazonas in Brazil. The absolute and relative frequencies of categorical variables and the median age were calculated. Hypothesis testing was done using the Chi-squared and Mann-Whitney tests with a 0.05 level of significance., Results: Of the 859 patients included in the clinical trial, 342 were interviewed. The majority of patients were male (58.2%) and multibacillary (78.3%) with a median age of 42 (7-65) years. Most of the interviewees had not completed primary education (48.0%), earned an income below three times the minimum wage (53.8%), were non-smokers (85.1%), did not regularly consume alcohol (88.3%), had not experienced any leprosy-related discrimination (69.2%) and showed a basic knowledge of the disease. With regards to paucibacillary patients, 87.8% and 90.9% of the PB U-MDT and PB R-MDT groups, respectively, indicated that they had not thought of defaulting treatment at any time. On a satisfaction scale of 1-5 (with five as the highest score), 92.7% of PB U-MDT and 100.0% of PB R-MDT patients gave a mark between three and five., Conclusions: The data suggest that the introduction of clofazimine into the therapeutic regimen did not diminish the level of treatment satisfaction among PB patients.

Background: Interventions to reduce leprosy-related stigma reduce the manifestations of stigma that cause so much suffering to individuals and their families., Purpose: This systematic review aims to identify interventions that have been used to reduce such stigma and to summarise what is known about their efficacy., Method: Electronic searches were undertaken using PubMed (Medline), CINAHL and PsycInfo databases. The internet was searched using Google Scholar for papers not published in these databases. All relevant papers written in Thai or English were included., Results: After reading 55 papers, three duplications and parallel literatures were removed, 18 were removed on abstract screening and nine after reading the full papers; eventually, 25 were included in this review. Interventions with some evidence of effectiveness in terms of stigma reduction comprise the integration of leprosy programmes into general health care; Information Education and Communication (IEC) programmes; and socio-economic rehabilitation., Conclusion: More evaluations are needed of the effect of the integration of leprosy programmes into general health services. The design and implementation of IEC interventions need to be preceded by careful study of the target area and population and should be undertaken in combination with other activities.

Objectives: To describe the social participation frequency and the physical disability of patients who were discharged after the multidrug therapy (MDT/WHO) and factors associated with these variables., Method: A cross-sectional and analytical study, examining associations, which took place Nova Iguaçu/Brazil. A random sample of patients treated with multidrug therapy from 1997 to 2006 was selected. The rationale for sample size was determined by the estimated proportion of physical disability in the amount of 23%, with an acceptable sampling error rate of 5%; significance level was established as 5% among the 1080 patients finally a total sample of 225 patients. The evaluations were performed from January 2010 to December 2011 and Socio-demographic and clinical data were collected from the applications completed in the national notifiable diseases information system (SINAN)., Results: In the period of interest, 2179 cases were diagnosed with leprosy; 1080 met the criteria for inclusion. Of these, 225 were randomly selected patients who had mean age 56.12 (±17.34 years), 55.6% were women, 39.9% went to high school and 28.9% were Caucasians. A total of 55.3% (125) showed multibacillary form, with a predominant dimorphous leprosy in 40.4%. Physical disability was present in 60.9% and social restrictions in 24.9% of patients. The variable physical disability was associated with the therapeutic regimen multibacillary and social participation., Conclusion: We observed a high frequency of disability and social restriction after long period after the start of MDT/WHO suggesting the late diagnosis of leprosy or inadequate follow-up after discharge. This study highlights the importance of systematic monitoring of these patients with their own criteria which could be held at the Family Health Strategy.

This paper is a record of the outcome of a focus group discussion in which 22 leprosy-affected self-help group facilitators related their experiences and attitudes associated with leprosy services which they voluntarily undertake. Enthusiasm to undertake leprosy services was general. The principal rewards for participation in such activities appear to have been social ascendance and self-esteem. Factors cited as being most likely to further motivate voluntary service reflected the perceived importance of personal reputation and the prestige of a clear association with Lalgadh Leprosy Services Centre.

In order to provide high quality leprosy services to children affected by leprosy, it is necessary to actively engage parents. A qualitative study was undertaken as part of routine monitoring of field activities in West Bengal, India. A non-probability sample of 20 parents whose child was currently undergoing treatment was interviewed to explore the experiences of parents with regard to the diagnosis of leprosy and the treatment of their child. The most common initial symptom was a white patch and the median duration between recognition of the symptom and care-seeking was 6 months. The most commonly reported side-effect was a black discolouration which had led to non-adherence as well as resulting in school absenteeism. None of the parents had any knowledge of reactions. Although current strategies have enabled early case detection, there are challenges related to ensuring treatment completion. Emphasis should be laid on interpersonal communication to empower parents, enabling them to appreciate the side-effects and recognise the complications early and be actively engaged as a treatment partner while their child is on MDT.

Background: Leprosy is a chronic infectious disease that has stigmatised people affected since ancient times until now. This has resulted in difficulties in the lives of those affected., Purpose: This literature review was conducted to understand the concept, causes, and determinants of stigma in leprosy., Method: Electronic searches were undertaken using PubMed (Medline), CINAHL and PsycInfo databases. The internet was searched through Google Scholar for papers not found in these databases. The main inclusion criteria were papers related to stigma or leprosy written in Thai or English., Results: After searching the databases, 84 papers were identified, 3 were removed because of duplication and parallel publication, and 20 were removed on abstract screening. After reading 61 full papers, 7 were excluded. Finally, 54 were included in this review. It was found that the concept of stigma involves not only characteristics considered undesirable, but also the social context of the individual or group. Reported causes and determinants of stigma related to leprosy are the external manifestations of the disease, cultural and religious beliefs, fear of transmission, association with people considered inferior and public health-related interventions., Conclusion: Stigma is a complex phenomenon that has multiple causes, often linked to the cultural context in which it occurs. Despite this, many similarities were found in leprosy-related stigma across countries and cultures, which would facilitate the development of interventions.

Introduction: 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., Objectives: 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., Methods: Semi-structured group interviews were carried out with 22 SCGs involving 299 leprosy affected people in Nampula and Manica provinces., Results: 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., Conclusions: People affected with leprosy perceive SCGs as useful in self-care for prevention of disabilities and social participation.

Introduction: Leprosy is slowly decreasing in incidence whereas diabetes is a growing health concern. Despite differences in aetiology, both diseases may lead to peripheral neuropathy and subsequent injuries and permanent impairments. There are also indications of similarities in psychosocial consequences. Prevention of Disability (POD) and self-management are often recommended for both diseases. This led to the idea of exploring the feasibility of combined peer-led self-care interventions for people with these disorders., Objective: To explore the opinions of health care professionals about combining peer-led self-care interventions for people affected by leprosy or diabetes in leprosy-endemic countries., Method: An exploratory study was conducted to collect quantitative data by means of an e-questionnaire and qualitative data through in-depth semi-structured interviews with key informants., Results: In total, 227 respondents answered the e-questionnaire and 22 in-depth interviews were conducted. Resemblances in physical complications between leprosy and diabetes were confirmed by the respondents. Psychosocial similarities included limitations in daily activity and in social participation, but stigma in leprosy was thought to be an important difference. Considerable overlap in current practices was found, mainly in patient education in POD, skin assessment and skin care, and the recommendation to use protective footwear. Knowledge exchange between leprosy and diabetes specialists is limited, although combined interventions were reported. The majority of respondents think that combined interventions are 'possible' (33.3%) or 'possible and promising' (30.8%). Professionals working with both diseases are more positive than those working with leprosy or diabetes only. The greatest barriers for combined interventions are perceived to be leprosy-related stigma, differences in underlying socio-economic status, attitudes of health care professionals and the current organization of health care systems., Conclusions: Responses indicate perspectives for combined interventions for the prevention of disabilities. For this, it is essential to intensify knowledge exchange between leprosy and diabetes professionals, to overcome barriers and to secure government policy support. Opportunities should be assessed in a situation-specific way.

Introduction: To compare the quality of life of people affected by leprosy living in a leprosarium and those reintegrated in communities in the southern region of Malawi., Design: A translated version of the World Health Organization Quality of Life BREF questionnaire (WHOQOL-BREF) was administered among two groups of people with leprosy-related residual impairment and disability living in either a leprosarium (male 47, female 53) or re-integrated into communities (male 41, female 57). The cross-sectional quantitative survey was conducted by trained Leprosy Control Assistants (LCAs). Descriptive statistics of mean and standard deviation were used to summarise the data while differences between the groups were evaluated using independent t-test. Level of significance was set at P < 0.05., Results: Demographic data revealed that there were more residents of an older age in the leprosarium. There was no statistically significant differences in the WHOQOL-BREF mean scores between by those affected by leprosy living in the two contexts. Statistically significant differences existed in the psychological, physical and environmental domains when age and gender were used as confounding factors., Conclusions: We conclude that there is need to provide interventions that will encompass age and gender to all those affected by leprosy to improve their quality of life in both contexts.

Background & Objectives: 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., Material & Methods: 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., Results: 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., Conclusions & Recommendations: 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.

Surgical nerve decompression in leprosy is indicated to prevent or treat nerve damage, and to improve sensory motor function and quality of life (QoL). The purpose of this study was to describe QoL of leprosy patients after surgical nerve decompression. Participants who underwent neurolysis in the last 5 years were recruited. The assessment consisted of collecting demographic and clinical information, QoL and its domain scores. Descriptive statistical analysis of demographic and clinical data was presented. Included 33 patients (43 +/- 11.0 years) who had neurolysis with a total of 61 nerves operated. The results of WHOQOL-bref showed that overall QoL mean was 11.2 (+/- 3.63) and domains scored as follow: physical (11.0 +/- 3.56), environment (11.47 +/- 2.11), psychological (13.29 +/- 2.79) and social relations (15.03 +/- 3.66). Measures of QoL should become part of the standard battery of tools used to assess health and well-being and it may contribute to identifying patients' needs in rehabilitation.

Objectives: 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., Design: 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., Results: 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., Conclusions: 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.

Aim: This study examined Health Related Quality of Life (HRQOL) among leprosy-affected elderly people at three leprosoria located in South Ghana., Methods: Seventy elderly people who have been cured of leprosy but were undergoing socio-economic rehabilitation at three selected Leprosaria in the southern part of Ghana, were involved in this study. They comprised 31 female and 39 male adults with leprosy-related residual impairment and disability. The main outcome measure was a standardised HRQOL questionaire which comprised physical functioning, role functioning, social functioning, cognitive functioning, health perception and pain. Descriptive statistics of mean and standard deviation were used to summarize the data whilst relationships and comparisons among and between the variables were evaluated using linear regression analysis and independent t-test respectively. Alpha level was set at P < 0.05., Results: The mean age of the participants was 59.7 +/- 13-5 years. The overall mean score of the subjects (40.9 +/- 7.6) on the six domains of the questionnaire was below average. The highest and lowest mean scores were obtained in social functioning (56.9 +/- 20.1) and physical functioning (15.0 +/- 25.1) domains respectively. All the domains were significantly and positively correlated (P < 0.05) with the overall HRQOL scores. Age had no significant relationship (P > 0.05) on any of the domains and the overall HRQOL scores. Male participants scored signicantly higher (P < 0.05) than their female peer on cognitive functioning and HRQOL., Conclusion and Implication: This study demonstrated low QOL among the sampled elderly people affected by leprosy at the selected leprosoria, thus stressing the need for measures that could improve their health and socio-economic status within the settlements.

Introduction: Many initiatives are undertaken to improve the empowerment of people with disabilities in developing countries. However, an overview of adequate measurement tools to evaluate such activities is not available to date. This systematic literature review aims to describe and assess the available tools to measure empowerment in people with disability, suitable for use in developing countries., Methods: A systematic literature review was conducted. Articles were eligible when they described the development, validation, translation or the use of an instrument measuring empowerment in the context of disability. The instruments were assessed on their psychometric properties and on equivalence properties when they were translated., Results: Thirty-six articles were found in which 17 questionnaires were developed, validated, translated or used. The questionnaires varied in the construct of empowerment, the target population and the psychometric properties. None of the questionnaires were developed or validated in a developing country. The psychometric properties and equivalence criteria were not adequately described and measured in any article. The Empowerment Scale (ES) of Rogers was the most often validated, translated and used questionnaire, receiving the highest number of positive ratings for the psychometric properties., Discussion/conclusion: The ES is the tool most widely used to measure empowerment, but adequate validation in a developing country context is still lacking. Cultural validity should be assessed in any culture before it is used. Further research is needed to develop empowerment instruments for developing countries and to assess the equivalence criteria, including psychometric properties of such questionnaires.

Objectives: To assess the effectiveness of social skills training in leprosy patients to raise self-esteem and reduce self-perceived stigma., Design: Five leprosy patients were given 10 day-long group-sessions of social skills training over 3 weeks. Training involved: identification of the emotions and concerns of patients when interacting socially; analysis of positive and negative social interactions and non-verbal and verbal skills training. Role-plays, videos and live models were used. Self-esteem and a reduction in self-perceived stigma were assessed qualitatively before and after training using semi-structured interviews. Assessment of change was scored under the indicators: self-perception, family, wider community and job. Patients were assessed for displaying new ways of interacting with people and changes in expectations for the future., Results: Qualitative analysis of the interviews before and after training suggested that social skills training could raise the self-esteem of leprosy patients and combat self-perceived stigma. Increase in self-esteem, as evident through the verbal interactions with the interviewers and behavioural changes in the community, were noted in the majority of patients., Conclusion: Social skills training along with counseling may be able to increase the self-esteem of leprosy patients, and so be a useful part of leprosy rehabilitation schemes to try and combat the stigma of leprosy.

Disability caused by leprosy may be associated with stigma. The aim of this work is to describe the degree of disability, quality of life and level of physical activity of individuals with leprosy and to identify possible correlations between these factors. Ninety-seven patients from two referral centres were studied. A complete medical history was taken and the World Health Organization degree of physical disability classification (WHO-DG), the International Physical Activity Questionnaire (IPAQ) and the Medical Outcome Study 36-item Short-form health Survey (SF36) were applied. The mean age of patients was 51 +/- 14.9 years old; participants were predominantly men, married, unemployed, had concluded treatment and had had lepromatous leprosy. The WHO-DG and the level of physical activity (P-value = 0.36) were not correlated. The WHO-DG showed that 72.2% of patients had disabilities, 37.1% of whom performed vigorous physical activities. No significant association was observed between the WHO-DG and the domains of the QoL SF-36 except for functional capacity (P-value = 0.02); the physical capacity is generally 'very good' when individuals have no disabilities and 'bad' with severe disabilities. In conclusion, the WHO-DG of leprosy patients does not affect the level of physica activities or quality of life except functional capacity. There is no significan association between physical activities and quality of life in these individuals.

Objectives: To assess the medical, disability prevention and rehabilitation and psychosocial needs of leprosy patients., Design: Community-based cross sectional study., Results: 259 registered leprosy-affected people were studied. 26% of subjects had presented by voluntary reporting. The mean detection delay was 8.25 months (SD 6.45). 66.8% of the study subjects had received regular treatment. Knowledge about multi-drug therapy (MDT) was satisfactory in 44.4% whereas knowledge of reactions was highly unsatisfactory. 7.7% had leprosy reactions among which only 25 received medical care. Disability proportion was 20.1% out of which 8.5% had Grade 1 and 11.6% had Grade 2 deformity. All these disabled individuals needed skin care, 44.2% of them needed wound care and 36.5% needed joint care. There was wide discrepancy between need for self care, training received and resources available for practising the same. The extent of dehabilitation was more among subjects with visible deformities., Conclusion: Medical needs identified in study subjects include capacity building of patients regarding MDT & reactions, plus awareness generation in general community such that voluntary reporting is enhanced and the detection dela shortened in the district. Strengthening drug inventory and distribution systems fo uninterrupted supply of drugs is essential. There is a need to reorient health care staff regarding leprosy management and DPMR. Rehabilitation needs identified are capacity building with regard to prevention of deformity and supplies (POD tool kit for self care) for the same. It is recommended that the district heath system should conceptualise and implement an evidence-based field level disability care and prevention programme, with community-based rehabilitation approach.

Oft-cited as a deterrent to elimination of the disease, stigma is still a critical feature of the leprosy landscape leading to ostracism, loss of employment, loss of housing, ridicule and rejection from society. The reason for leprosy-stigma rests historically and culturally on the mythology about the disease's origin and transmission, and its aesthetic features such as the enigmatic physical disfigurement, and the distinctive ulcers consequent of untreated leprosy. While the literature on leprosy has been consistent in showing that stigma is a social complication of the condition worldwide, there is seldom recognition of processes of stigmatisation in broader contexts. Effective and sustainable interventions directed at curbing leprosy stigma and so improving its social course must, however, be informed by an appreciation of such contexts; particularly in the light of the goal to eliminate the disease worldwide. Examining stigma in the broader contexts of historical, social, economic, political contexts is the aim of this paper. The paper also has implications for broad ranging intervention efforts aimed at de-constructing leprosy-stigma in order to craft a more accommodating ambiance of acceptance, care and support for people affected by leprosy.

Background: In the Netherlands, leprosy is a rare and non-endemic disease, still occurring as an 'import disease'. Moreover a considerable group of people affected by leprosy, originating mainly from the former Dutch colonies, suffer from neuropathic complications. This study investigates the social implications of leprosy for those affected in the Netherlands., Methods: Thirty-one people affected were interviewed as well as six medical leprosy experts. The social implications were measured by means of semi-structured interviews and the Participation Scale., Results: Self-stigma, shame and secrecy were often reported. Discrimination and stigmatisation of ex-leprosy patients by people around them seems a less frequent problem. Yet, people affected by leprosy seem to be a forgotten group with a high social burden due to low self-esteem and reduced social participation. Medical experts do not seem to be aware of the severity of leprosy-related forms of stigma in their patients. Ex-leprosy patients lack sound disease-related information and support groups. Due to the low incidence and as a consequence, the lack of awareness among doctors, leprosy patients in the Netherlands are faced with substantial diagnostic delay (mean delay 1-8 years)., Conclusions: Leprosy and its stigma affect the social lives of patients, even in a non-endemic area such as the Netherlands. Almost all respondents were affected by self-stigma. There is a need for 1) more information and support groups for patients, and 2) increased awareness among professionals.

This article sets out to expand the way stigma, and those affected by it, are understood within leprosy discourse and to apply these insights to the analysis of the experiences of leprosy workers. The term stigma is often used simply as shorthand for 'negative social experience'. However, to reduce the negative aspects of complex everyday life experiences to a single word is often overly simplistic and can serve to objectify, rather than illuminate, the experiences of those affected. This article argues that in order to understand the lived experience of stigma we must come to understand stigma as an ongoing, dialectical social process and develop an approach to stigma that analytically separates stigma from its negative social consequences. The article applies these insights to data collected during 14 months of fieldwork with front-line leprosy workers in India, which suggests that falling leprosy prevalence rates and a rapidly changing policy landscape have led to leprosy workers feeling marginalised and stigmatised within their own organisation. The article argues that, rather than seeing stigma merely as a negative process in which leprosy workers are passive victims, we must recognise that stigma also plays a key role in the creation and maintenance of leprosy workers' identity and is utilised as a strategic tool in the struggle for influence between different groups within the organisation. Finally, the article argues for the benefit of expanding our understanding of stigma across public health and of applying these insights to designing future interventions.

If it can be argued that no single attribute or condition (leprosy included) is inherently or universally considered to be 'deeply discrediting,' to quote Goffman, then we must consider how external factors shape stigma associated with that condition in different cultural and socioeconomic contexts. Often, an analysis of what is perceived to be stigma towards people affected by leprosy uncovers other prejudices or stigmatising attitudes associated with class, gender, and/or ethnic inequalities in that society. The movement of people across international borders adds new dimensions to the experience of leprosy, as affected individuals confront different sets of understandings of the disease among healthcare professionals, friends, family, and employers in host and sending countries. Preconceptions of the immigrant 'other' in host countries may be bound up with notions of disease and danger, further complicating the experience of leprosy treatment for immigrants. Drawing on the work of others and on early stage qualitative research on leprosy among Brazilian immigrants to the United States, this paper will consider the ways in which immigration and transnational processes could affect the experience of stigma among immigrants affected by leprosy.