Body map stories from Colombia: experiences of people affected by leprosy and the influence of peers during diagnosis and treatment.

INTRODUCTION: Almost one third of people affected by leprosy in Colombia suffer from disability, which often results from delayed diagnosis and treatment. We aimed to explore the experience of people affected by leprosy during the process of diagnosis and treatment and if and how this experience was influenced by peers. METHODS: A qualitative study using body map stories was conducted from October 2019 to February 2020 in Colombia. Adult people affected by leprosy were recruited through patient associations in different cities. We conducted three sessions with an average duration of 2-3 h per participant, during which the participants created a painted map of their body and chose symbols to represent their experience, while being engaged in an informal interview. The sessions were audio recorded, transcribed verbatim and analyzed thematically by an interdisciplinary team, consisting of physicians, social workers and a person affected by leprosy. RESULTS: The 17 study participants (11 female) were aged 20 to 70 years. Leprosy-related manifestations ranged from no to advanced disability. Some participants were active members of associations for people affected by leprosy. Three main themes were identified during analysis: (1) A long pathway to diagnosis, (2) Therapy as a double-edged sword and (3) The influence of other people affected by leprosy. The participants described an often years-long process until being diagnosed, which was marked by insecurities, repeated misdiagnosis, and worsening mental and physical health. Delayed diagnosis was related to late health care seeking, but also to inadequate health communication, lack of leprosy-related knowledge and negligence among health care workers. A high desire to cure motivated the participants to take their medication rigorously, despite the high treatment burden. Support from peers, either within the own social environment or provided from associations, contributed to a faster diagnosis and increased therapy adherence. Peers helped to recognize the symptoms, urged patients to seek care, recommended physicians with leprosy-related knowledge and provided a realistic example of both disease severity and curability. CONCLUSION: People affected by leprosy experience a significant burden during the process of diagnosis and treatment. Involving well-trained peers could foster early diagnosis, treatment compliance and prevention of disability.

How do Positive Deviants Overcome Health-Related Stigma? An Exploration of Development of Positive Deviance Among People With Stigmatized Health Conditions in Indonesia.

A constructivist grounded theory approach was used to understand how some people living with stigmatized health conditions develop positive deviance to overcome stigma. We examined interviews from 13 identified positive deviants living with four different stigmatized health conditions (HIV, leprosy, schizophrenia, and diabetes) in Indonesia. Positive deviance develops in the form of psychological empowerment through improvement of self-belief and perception (intrapersonal component), development of understanding and skill to exert control in life (interactional component), and self-discovery of successful behaviors and strategies to avert stigma (behavioral component). Positive deviants, after being empowered, start empowering others affected by sharing their knowledge and fostering social awareness and acceptance. The findings revealed the presence of problem-solving ability and agency within the community of stigmatized individuals in Indonesia and warrant researchers to partner with the community to expedite the diffusion of transferable positive deviant strategies within and outside the communities.

Intersectionality and health-related stigma: insights from experiences of people living with stigmatized health conditions in Indonesia.

BACKGROUND: Health-related stigma is a complex phenomenon, the experience of which intersects with those of other adversities arising from a diversity of social inequalities and oppressive identities like gender, sexuality, and poverty - a concept called "intersectionality". Understanding this intersectionality between health-related stigma and other forms of social marginalization can provide a fuller and more comprehensive picture of stigma associated with health conditions. The main objective of this paper is to build upon the concept of intersectionality in health-related stigma by exploring the convergence of experiences of stigma and other adversities across the intersections of health and other forms of social oppressions among people living with stigmatized health conditions in Indonesia. METHODS: This qualitative study interviewed 40 people affected by either of four stigmatizing health conditions (HIV, leprosy, schizophrenia, and diabetes) in Jakarta and West Java, Indonesia between March and June 2018. Data was analyzed thematically using an integrative inductive-deductive framework approach. RESULTS: The main intersectional inequalities identified by the participants were gender and socioeconomic status (n = 21), followed by religion (n = 13), age (n = 11), co-morbidity (n = 9), disability (n = 6), and sexuality (n = 4). Based on these inequalities/identities, the participants reported of experiencing oppression because of prevailing social norms, systems, and policies (macro-level), exclusion and discrimination from societal actors (meso-level), and self-shame and stigma (micro-level). While religion and age posed adversities that negatively affected participants in macro and meso levels, they helped mitigate the negative experiences of stigma in micro level by improving self-acceptance and self-confidence. CONCLUSION: This study uncovered how the experience of health-related stigma intersects with other oppressions originating from the various social inequalities in an individual's life. The findings highlight the importance of acknowledging and understanding the multi-dimensional aspect of lives of people living with stigmatized health conditions, and warrant integrated multi-level and cross-cutting stigma reduction interventions to address the intersectional oppressions they experience.

Disease experiences of female patients with Hansen's disease residing in settlement in Korea.

PURPOSE: The purpose of this study was to identify female Hansen's disease experience in settlement village in Korea. METHOD: For this study, 11 participants in settlement village were purposively chosen. Data were collected through in-depth individual interviews from July to December 2015. Verbatim transcripts were analyzed following Colaizzi's phenomenological analysis to uncover the meaning of the experiences of the participants. RESULTS: The study results showed that female Hansen's disease experience in settlement village consisted of 9 theme and 4 theme clusters: 1) Inescapable shackles; 2) Suffered as if being in prison,; 3) In no position to be a woman or a mother; 4) Another hometown. CONCLUSION: The findings of this study recommends that health care professionals should pay attention not only to leprosy patients to reduce their physical and psychological suffering but also to the community and public culture to promote integration of Hansenin in the community, continued promotion and reform are needed to overcome the stigma. The results of the present study can help us in a better understanding of various aspects of female patients with Hansen's disease residing in settlement.

Relationship between psychological health and quality of life of people affected by leprosy in the community in Guangdong province, China: a cross-sectional study.

BACKGROUND: This paper investigates the relationship between psychological health and quality of life (QOL) of people affected by leprosy (PAL) living in a community in Guangdong province, China. METHODS: A population-based cross-sectional survey was conducted from April to October 2016 in Guangdong province, China. The 12-item general health questionnaire (GHQ12) and World Health Organization Quality of life-BREF (WHOQOL-BREF) were used to evaluate the psychological health and QOL of the participants. PAL recruited for this study included those who were (1) registered in LEPMIS by the end of 2015 and living in the community, (2) able to be contacted by investigators, and (3) willing to provide informed written consent for enrolling in the study. Proportions, medians, and ratios were used to describe the demographics of the participants and χ2 test was used to compare groups with different psychological health states. Pearson's correlation coefficient and logistic regression analyses were used to assess the relationship between GHQ12 and QOL score. RESULTS: A total of 7230 PAL (5527 males and 1701 females, average age 67.3 ± 13.1 years) living in the community participated in the study. The participants averaged 1.7 ± 2.7 points on the GHQ12. Of these, 23.5% had scores meeting a psychological disorder (≥3 points). The scores for the physical, psychological, and social relationships, and environment dimensions of QOL were 17.2 ± 2.4, 20.6 ± 2.7, 9.7 ± 1.7, and 24.6 ± 4.0, respectively. Gender, age, employment, profession, and the four dimensions of QOL were independent factors associated with psychological health of PAL. CONCLUSION: In addition to focusing on the factors associated with poor QOL and psychological health amongst PAL, there is an urgent need for stigma reduction, rehabilitation programs and social integration. This may be achieved by engaging community members together with PAL to design a locally tailored intervention program.

Living with stigma: Voices from the Cured Lepers' village in Ghana.

Stigmatization of persons cured of leprosy (PCLs) is a long standing social problem especially in the developing world, which often leads to their isolation from mainstream society. This study presents the voices of PCLs in the Cured Lepers' Village in Ho, a community located in Southern Ghana. The study collected data through in-depth interviews and focus group discussions with 20 participants. Findings indicate that PCLs continue to live a significant number of years in the Cured Lepers' Village after they are cured of leprosy. This situation is due to several factors such as stigma (including self-stigma), isolation, and neglect. Fear of the disease and compliance with religious and sociocultural beliefs, and regulations regarding leprosy were identified as reasons for the isolation of people affected by the disease. The study recommends a comprehensive public education program on leprosy targeting community leaders to help re-integrate PCLs into their communities and calls for social workers to be part of this process.

Assessing the feasibility of integration of self-care for filarial lymphoedema into existing community leprosy self-help groups in Nepal.

BACKGROUND: Lymphatic filariasis (LF) and leprosy are disabling infectious diseases endemic in Nepal. LF infection can lead to lymphoedema and hydrocoele, while secondary effects of leprosy infection include impairments to hands, eyes and feet. The disabling effects of both conditions can be managed through self-care and the supportive effects of self-help groups (SHGs). A network of SHGs exists for people affected by leprosy in four districts in Nepal's Central Development Region, however no such service exists for people affected by LF. The aim of this study was to determine the feasibility of integrating LF affected people into existing leprosy SHGs in this area. METHODS: A survey was conducted using a semi-structured questionnaire to elicit information on: (i) participant characteristics, clinical manifestation and disease burden; (ii) participants' knowledge of management of their condition and access to services; and (iii) participants' knowledge and perceptions of the alternate condition (LF affected participants' knowledge of leprosy and vice versa) and attitudes towards integration. RESULTS: A total of 52 LF affected and 53 leprosy affected participants were interviewed from 14 SHGs. On average, leprosy affected participants were shown to have 1.8 times greater knowledge of self-care techniques, and practiced 2.5 times more frequently than LF affected participants. Only a quarter of LF affected participants had accessed a health service for their condition, compared with 94.3% of leprosy affected people accessing a service (including SHGs), at least once a week. High levels of stigma were perceived by both groups towards the alternate condition, however, the majority of LF (79%) and leprosy (94.3%) affected participants stated that they would consider attending an integrated SHG. CONCLUSIONS: LF affected participants need to increase their knowledge of self-care and access to health services. Despite stigma being a potential barrier, attitudes towards integration were positive, suggesting that the SHGs may be a good platform for LF affected people to start self-care in this area. TRIAL REGISTRATION: This is not a registered trial.

[Interdisciplinary Concepts of Paediatrics and Clinical Pharmacy to Optimise Anticonvulsant Treatment]. / Interdisziplinäre Konzepte von Pädiatrie und Klinischer Pharmazie zur Optimierung der Antikonvulsivatherapie.

Expertise in a variety of fields is required for the diagnostic process of epilepsies in children and adolescents as well as for their treatment with anticonvulsants. Patients benefit in the process from the cooperation of different health care professionals. It is of critical importance for risks to be minimised and for the efficacy shown in controlled clinical trials to be maintained in routine conditions. In the first instance, drug prescription procedures, including the choice of anticonvulsants and combinations of drugs and dosing, have to be considered. The administration of drugs has, of course, also to be taken into account. Only if patients are given their anticonvulsants appropriately, the intended success of the therapy can be accomplished. Strategies aimed at improving drug administration have to be directed not only at nurses but also at parents, children and adolescents themselves, as well as caregivers in schools and children's day-care facilities. By providing theoretical teaching, practical training, and routinely including pharmacists in the therapeutic team, drug-related problems that may result in limited effectiveness and increased risks are prevented. As a result, drug (therapy) safety is not only qualitatively improved, but the degree of participation and quality of life of patients and families is improved as well.

Leprosy's Untainted Child.

In the face of an obdurate disease, the Mission to Lepers made a virtue out of "saving" children from leprosy and from paganism by separating them from their parents so that they became a source of publicity, sponsorship, and fund-raising. This policy transformed a benevolent work of mercy into a professional one, for it soon became clear that children separated from their parents did not develop leprosy. Consequently, the asylum became a site where scientific conclusions were made about the transmission of the disease, and the authority of the mission was enhanced at international medical conferences. This nascent professionalism became sufficient for the Philippines to also be persuaded to remove children from their leprosy-infected parents. In turn, Culion-based research on the observations of children ensured the authority of the American and Philippine doctors in informing decisions made by the League of Nations and later the World Health Organization.

Stigmatisation and discrimination: Experiences of people affected by leprosy in Southern Ghana.

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.

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

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.

Cultural validation of a new instrument to measure leprosy-related stigma: the SARI Stigma Scale.

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).

Knowledge, Attitudes and Practices relating to Leprosy among Public Health Care Providers in Colombo, Sri Lanka.

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.

Assessment of stigma among people living with Hansen's disease in south-east Nigeria.

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.

Role of Reconstructive Surgery (RCS) in Improving the Quality of Life of Leprosy Afflicted Persons.

Since time immemorial, stigma has been associated with leprosy mainly due to deformity and disability which in turn affects the physical, psychological, social and economical well being of some of the leprosy afflicted persons (LAPs). To prevent and correct deformities Government of India has focused on early diagnosis and appropriate treatment. In addition government has been providing services of Reconstructive Surgery (RCS). RCS corrects the deformity and is expected to help in reducing the stigma in society and reintegrate the affected persons in to society so that they become economically self reliant and carry out their normal livelihood activities without any prejudice. As the stigma has cultural background, this study has.been carried out with to assess the existing stigma level in pre RCS in society in parts of Odisha and compare with that of post RCS. The study was conducted in Sonepur district of Odisha. The sample size is the entire universe of all the 60 patients who had undergone the RCS process, during these the recent years. The methods adopted for data collection were the tools like questionnaire schedules, interview, observation, FGD and in depth case studies. Almost 86% of these Leprosy afflicted persons (LAPs) were very satisfied due to improvement in acceptance by their family, friend, relatives and society after surgery because of the correction of deformity by RCS as it enabled them to get back into normal life. The economical status improved in 8/60 (13%) after RCS, some becoming capable of earning more than Rs. 10,000/- per month after RCS. To conclude, in this settings of Sonepur (Odisha). RCS appeared to help the LAPs in improving their social acceptance thereby reducing stigma and also improving their economic status thus empowering them to lead their life as a normal human beings. There is need to enlarge and expand these studies to other parts of state/region so that the link with beliefs, type of disabilities and also type of surgery could be better understood and the knowledge generated could be applied to get optimum results.

Correlates of Defaulting from MDT among Leprosy Patients.

In order to analyse the factors of demographic as well as disease related variables and their correlation with Rate of Defaulting (ROD) from Multi Drug Therapy (MDT) among leprosy patients, secondary data have been collected from 3,579 new cases registered for MDT, during a period of 4 years from 2007 to 2010 in four leprosy hospitals/ treatment centers across the four high endemic states viz. Uttar Pradesh, Chhattisgarh; Maharashtra and Andhra Pradesh. Year wise percentage of patients defaulted was calculated on aggregate as well as with reference to each centre and cross tabulated with demographic and disease related factors. Findings show that out of the total 3,579 new cases, 1944,(54.3%) defaulted with variation across centers ranged from 44 to 66 percent. Comparison of ROD against type of leprosy indicated that MB types defaulted (55.7%) more than PB (50.6%) types, (statistically significant difference, (p=0,04). ROD of male patients across the centers ranged from 45% to 67.7% in comparison with 42.4% to 61.5% of female patients. A-statistically significant difference (p=6.04) was found between the overall ROD of males (56.35%) and females (51.47%). The ROD among those with more severe disabilities (WHO Gr-2) ranged between 44% to 67.5% across the centers, while the same among those'with less severe disabilities (Gr-0&1) ranged from 42.6 to 72.7 percent. Comparison of ROD against severity of disability was found statistically significant only across 2 centers. No statistically significant variation was found when ROD of adult patients with refeince to each centr ranged between (43.6% to 65.4%) was compared with the same of children ranged beeIen (36.2% to 69.3%). Across each of these categories and centers,'the ROD remained consistent over the ,4 years. Based on the above findings'this may be concluded that male sex and MB types are significant correlates of default from treatment. Severity of disabilities plays significant role only in certain areas, probably due to other interfering factors, which needs to be further investiged.

Comparing the perception of community members towards leprosy and tuberculosis stigmatization.

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.

The patient perspective of the diagnostic process for leprosy in Brazil. An exploratory study.

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.

Lay and peer counsellors to reduce leprosy-related stigma--lessons learnt in Cirebon, Indonesia.

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.

Application of the SRQ20 and the protocol of psychological assessment in patients with leprosy in a Reference Centre in Brazil.

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.