Patient perception and satisfaction with a smartphone-based teledermatology service initiated during the COVID-19 pandemic at a tertiary care hospital in North India.

Background Telemedicine is being increasingly used to provide healthcare to patients, particularly during the COVID-19 pandemic. Aims The study aimed to study patient perception and satisfaction with a smartphone-based hybrid teledermatology service initiated during the COVID-19 pandemic. Methods This was a cross-sectional telephonic survey including patients ≥18 years of age who had received a teledermatology consultation. After noting the demographic, clinical and teleconsultation details, patients were administered the Telemedicine Satisfaction Questionnaire and an additional 6-item questionnaire. Patients were also asked to give qualitative feedback and suggestions for improvement using a semi-structured interview guide. Results We interviewed 201 subjects. The most common diagnoses were pemphigus (27, 13.4%), superficial fungal infections (24, 11.8%), psoriasis (22, 10.9%) and dermatitis (21, 10.4%). The overall mean Telemedicine Satisfaction Questionnaire score was 4.20± 0.71. One hundred seventy-one (85.1%) patients responded that they would use teledermatology services again, while 168 (83.6%) reported satisfaction with the quality of services. A majority of the patients were largely satisfied with the various components involved, though some concerns were raised about the care perceived as not at par with physical consultations, difficulty in procuring medicines, lack of confidence in photographic diagnoses and the lack of a personal touch. Patients with urticaria (P=0.020), those who were advised a change in treatment (P=0.029) and those with improvement in their skin disease (P=0.026) were more likely to be satisfied. Limitations Our study was conducted during the COVID-19 pandemic when patient acceptability was likely to be higher. Only follow-up patients were included in the study. Conclusion Patient satisfaction levels were generally high with teledermatology. Addressing lacunae that negatively impact patient perception and satisfaction will help in greater acceptance of teledermatology services.

Perception of cure among leprosy patients post completion of multi-drug therapy.

BACKGROUND: Leprosy is a treatable disease; however, the release from treatment after completion of multidrug therapy (MDT) often does not equal absence of health problems. Consequently, sequelae interfere with the patient's perception of cure. The objective of this study was to analyze the factors associated with the perception of not being healed among people treated for leprosy in a highly endemic area in Brazil. METHOD: A cross-sectional study of perceived cure of leprosy in the post-release from treatment period was conducted in Cáceres in the state of Mato Grosso, Brazil. The study included a total of 390 leprosy patients treated with MDT and released after completion of treatment from 1 January 2000 to 31 December 2017. The dependent variable was self-reported cure of leprosy; the independent variables included clinical, operational and socioeconomic variables. RESULTS: Out of the 390 former leprosy patients, 304 (77.9%) perceived themselves as cured and 86 (22.1%) considered themselves unhealed. Among the latter, 49 (57.0%) reported muscle weakness and joint pains. Individuals with complaints related to leprosy post-release from treatment had a 4.6 times higher chance to self-report as unhealed (OR 4.6; 95% CI 2.5-8.5). Patients with physical disabilities (PD) grade 1 and 2 at the time of the study had a 3.1 (OR 3.1; 95% CI 1.3-7.4) and 8.8 (OR 7.7; 95% CI 3.5-21.9) times higher likelihood to self-identify as unhealed, respectively. CONCLUSION: Among successfully treated leprosy patients, a quarter self-report as unhealed of the disease. The factors associated with the perception of being unhealed are PD and complaints related to leprosy in the post-release from treatment phase.

Improving treatment outcomes for leprosy in Pernambuco, Brazil: a qualitative study exploring the experiences and perceptions of retreatment patients and their carers.

BACKGROUND: Brazil has a high leprosy burden and poor treatment outcomes (TOs), manifesting in high relapse rates. Pernambuco, an impoverished Brazilian state suffering notable geographical health inequalities, has 'hyperendemic' leprosy. Although current literature identifies barriers and facilitators influencing leprosy treatment compliance, inadequate investigation exists on other factors influencing TOs, including carers' roles and psycho-dermatological impact. This qualitative study explores experiences and perceptions of leprosy patients and their carers in Pernambuco, Brazil; to identify location-specific factors influencing TOs, and consequently inform future management. METHODS: 27, semi-structured, in-depth interviews were conducted with 14 patients and 13 carers. Participants were recruited using maximum variation and snowball sampling from three clinics in Petrolina, Pernambuco. Transcripts and field notes from both participant groups were separately analysed using conventional thematic and deviant case analysis. The University of Birmingham Internal Research Ethics Committee and Instituto Lauro de Souza Lima provided ethical approval. RESULTS: Two homologous sets of four, primary, interdependent themes influencing leprosy TOs emerged: 'personal factors'; 'external factors'; 'clinical factors'; and 'the healthcare professional (HCP)-patient-carer relationship'. Poor participant knowledge and lack of symptomatic relief caused patients to distrust treatment. However, because participants thought HCP-led interventions were vital for optimal TOs, patients were effectively persuaded to adhere to pharmaceutical treatments. High standard patient and population education facilitated treatment engagement by encouraging evidence-based medicine belief, and dispelling health myths and stigma. Healthcare, on occasions, was perceived as disorganised, particularly in resource-scarce rural areas, and for those with mental health needs. Participants additionally experienced incorrect/delayed diagnoses and poor contact tracing. Leprosy's negative socio-economic impact on employment - together with stigma, dependency and changing relationships - caused altered senses of identity, negatively impacting TOs. Better dialogue between patients, HCPs and carers facilitated individualised patient support. CONCLUSION: This study highlights the importance of: effective evidence-based leprosy education; communication between HCPs, patients and carers; state-funded support; and healthcare resource distribution. These findings, if prioritised on governmental scales, provide the valuable insight needed to inform location-specific management strategies, and consequently improve TOs. Future research should evaluate the effectiveness of these implementations. Failure to address these findings will hinder regional elimination efforts.

Leprosy perceptions and knowledge in endemic districts in India and Indonesia: Differences and commonalities.

BACKGROUND: Understanding how knowledge, attitudes and practices regarding leprosy differ in endemic countries can help us develop targeted educational and behavioural change interventions. This study aimed to examine the differences and commonalities in and determinants of knowledge, attitudes, practices and fears regarding leprosy in endemic districts in India and Indonesia. PRINCIPLE FINDINGS: A cross-sectional mixed-methods design was used. Persons affected by leprosy, their close contacts, community members and health workers were included. Through interview-administered questionnaires we assessed knowledge, attitudes, practices and fears with the KAP measure, EMIC-CSS and SDS. In addition, semi-structured interviews and focus group discussions were conducted. The quantitative data were analysed using stepwise multivariate regression. Determinants of knowledge and stigma that were examined included age, gender, participant type, education, occupation, knowing someone affected by leprosy and district. The qualitative data were analysed using open, inductive coding and content analysis. We administered questionnaires to 2344 participants (46% from India, 54% from Indonesia) as an interview. In addition, 110 participants were interviewed in-depth and 60 participants were included in focus group discussions. Knowledge levels were low in both countries: 88% of the participants in India and 90% of the participants in Indonesia had inadequate knowledge of leprosy. In both countries, cause, mode of transmission, early symptoms and contagiousness of leprosy was least known, and treatment and treatability of leprosy was best known. In both countries, health workers had the highest leprosy knowledge levels and community members the highest stigma levels (a mean score of up to 17.4 on the EMIC-CSS and 9.1 on the SDS). Data from the interviews indicated that people were afraid of being infected by leprosy. Local beliefs and misconceptions differed, for instance that leprosy is in the family for seven generations (Indonesia) or that leprosy is a result of karma (India). The determinants of leprosy knowledge and stigma explained 10-29% of the variability in level of knowledge and 3-10% of the variability in level of stigma. CONCLUSION: Our findings show the importance of investigating the perceptions regarding leprosy prior to educational interventions in communities: even though knowledge levels were similar, local beliefs and misconceptions differed per setting. The potential determinants we included in our study explained very little of the variability in level of knowledge and stigma and should be explored further. Detailed knowledge of local knowledge gaps, beliefs and fears can help tailor health education to local circumstances.

Improving treatment outcomes for leprosy in Pernambuco, Brazil: a qualitative study exploring the experiences and perceptions of retreatment patients and their carers

Background: Brazil has a high leprosy burden and poor treatment outcomes (TOs). Pernambuco, an impoverished Brazilian state suffering from notable geographical health inequalities, has 'hyperendemic' leprosy. Although current literature identifies the barriers and facilitators influencing leprosy treatment compliance, there is inadequate investigation into other factors influencing TOs, including carers' roles. This qualitative study explores the experiences, perceptions and beliefs of leprosy patients and their carers in Pernambuco, Brazil; to identify location-specific factors influencing TOs, and consequently appropriately inform future management strategies. Methods: 27, semi-structured, in-depth interviews were conducted with 14 patients and 13 carers. Participants were recruited using maximum variation and snowball sampling from three clinics in Petrolina, Pernambuco. Transcripts and field notes from both participant groups were separately analysed using conventional thematic and deviant case analysis. Ethical approval was obtained from the University of Birmingham Internal Research Ethics Committee and the Instituto Lauro de Souza Lima, Brazil. Results: Two homologous sets of four, primary, interdependent themes influencing leprosy TOs emerged: 'personal factors'; 'external factors'; 'clinical factors'; and 'the HCP-patient-carer relationship'. Poor participant knowledge and lack of symptomatic relief caused patients to distrust treatment. However, because participants thought HCP-led interventions were vital for optimal TOs, patients were effectively persuaded to adhere to pharmaceutical treatments. High standard patient and population education facilitated treatment engagement by encouraging evidence-based medicine belief, and dispelling health myths and stigma. Healthcare, on occasions, was perceived as disorganised, particularly in resource-scarce rural areas, and for those with mental health needs. Participants additionally experienced incorrect/delayed diagnoses and poor contact tracing. Leprosy's negative socio-economic impact on employment ­ together with stigma, dependency and changing relationships ­ caused an altered sense of identity, negatively impacting TOs. Better dialogue between patients, HCPs and carers facilitated individualised patient support. Conclusion: This study highlights the importance of: effective evidence-based leprosy education; communication between HCPs, patients and carers; state-funded support; and healthcare resource distribution. These findings, if prioritised on governmental scales, provide the valuable insight needed to inform location-specific management strategies, which are required to improve TOs. Future research should evaluate the effectiveness of these implementations. Failure to address these findings will hinder regional elimination efforts.

Conocimientos, creencias, percepciones y la búsqueda de tratamiento para la lepra en Costa Rica / Knowledge, beliefs and perceptions regarding leprosy treatment seeking in Costa Rica

Resumen: Objetivo: Identificar conocimientos, creencias y percepciones relacionadas con la búsqueda del tratamiento de la lepra en Costa Rica desde la perspectiva de la persona con la enfermedad y en el contexto de la vida cotidiana. Métodos: Se llevó a cabo un estudio cualitativo de carácter exploratorio a partir de 24 entrevistas semi-estructuradas a personas con lepra o con antecedente de haber padecido lepra entre 23 a 88 años de edad que se atendieron en el sistema de salud público costarricense. Se utilizó una selección de informantes. Resultados: Los informantes no consultaron hasta que los síntomas fueron difíciles de manejar. En cuanto a las creencias sobre cómo adquirieron la lepra, algunos informantes desconocen su causa. Los sentimientos de vulnerabilidad en relación con este padecimiento y valoración de la gravedad de los síntomas percibidos como también la revaluación de algunos signos de alarma que son comunes a la lepra no fueron atribuidos a la enfermedad, a pesar de poseer antecedentes-familiares. Para muchos de los informantes la palabra lepra tiene connotaciones sociales de oprobio, y la consecuencia es que la propia persona que padece lepra se estigmatiza al sentirse un "leproso identificable". Conclusión: La forma en que las personas interpretan la lepra influye en la búsqueda de ayuda. Urge la implementación de acciones de capacitación dirigidas a las personas con lepra, sus familias, comunidades y personal de salud para generar abordajes articulados y efectivos que permitan prevenir la enfermedad o una detección oportuna.

Abstract Objective: Identify knowledge, beliefs and perceptions regarding treatment seeking in Costa Rica from the perspective of the person with the disease and in daily life context. Methods: An exploratory qualitative study was carried out based on 24 semi-structured interviews with people with leprosy or leprosy history between 23 and 88 years old who were treated by the Costa Rican Public Health System. Informants´ selection was used. Results: Informants did not attend to medical care until the symptoms were difficult tomanage. For beliefs about how they got leprosy, some of them do not know their cause. Despite the fact that most of them have a family history, vulnerability feelings in relation to their condition, severity assessment of perceived symptoms as well as some warning signs that are common to leprosy were not attributed to it. For many informants the word leprosy has social opprobrium meaning, and the consequence is that the person who suffers leprosy stigmatizes himself as an"identifiable leper." Conclusion: The way people understand leprosy influence help seeking. Information actions must be aimed to people with leprosy, their families, communities and health care providers in order to generate articulated and effective approaches for disease prevention or timely detection.

Percepção de adolescentes sobre a hanseníase / Perception of adolescents about leprosy

Objetivo: analisar a percepção de adolescentes sobre a hanseníase. Método: trata-se de uma pesquisa qualitativa, descritiva, constituída por 30 adolescentes de uma escola pública, realizada no período de agosto a novembro de 2016. Coletaram-se os dados a partir do jogo dinâmica da face, cujas falas foram transcritas e analisadas conforme a técnica de Análise de Conteúdo na modalidade Análise Temática. Resultados: verificase, nas falas dos adolescentes, pouco conhecimento sobre a hanseníase, sem discernimento sobre os aspectos gerais da doença, associando-a a outras enfermidades. Percebe-se que eles têm a família e a televisão como principais fontes de informação sobre a doença, e o desconhecimento sobre a hanseníase gera uma atmosfera de medo, dúvida, angústia e preocupação, principalmente, por pensarem que a doença não tem cura, causa isolamento social, e pode ser transmitida a seus familiares. Conclusão: conclui-se que os adolescentes percebem a hanseníase como uma doença grave, incurável e causadora de medo, vergonha e isolamento social.(AU)

Objective: to analyze the adolescents' perception about leprosy. Method: this is a qualitative, descriptive study of 30 adolescents from a public school, carried out from August to November 2016. Data was collected from the dynamic face game; the speeches were transcribed and analyzed according to the Content Analysis technique in the Thematic Analysis modality. Results: there is little knowledge about leprosy in adolescents, without discernment about the general aspects of the disease, associating it with other diseases. It is perceived that they have family and television as the main sources of information about the disease, and the lack of knowledge about leprosy generates an atmosphere of fear, doubt, anguish and concern, mainly because they think that the disease has no cure, causes social isolation, and can be transmitted to their family members. Conclusion: it is concluded that adolescents perceive leprosy as a serious, incurable disease that causes fear, shame and social isolation.(AU)

Objetivo: analizar la percepción de los adolescentes sobre la lepra. Método: se trata de una investigación cualitativa, descriptiva, constituida por 30 adolescentes de una escuela pública, realizada en el período de agosto a noviembre de 2016. Se recogen los datos a partir del juego dinámico de la cara, cuyas palabras fueron transcritas y analizadas de acuerdo con la técnica de Análisis de Contenido en la modalidad Análisis Temático. Resultados: se verifica, en las conversaciones de los adolescentes, poco conocimiento sobre la lepra, sin discernimiento sobre los aspectos generales de la enfermedad, asociándola a otras enfermedades. Se percibe que tienen la familia y la televisión como principales fuentes de información sobre la enfermedad, y el desconocimiento sobre la lepra genera una atmósfera de miedo, duda, angustia y preocupación, principalmente, por pensar que la enfermedad no tiene cura, causa aislamiento social, y puede ser transmitida a sus familiares. Conclusión: se concluye que los adolescentes perciben la lepra como una enfermedad grave, incurable y causante de miedo, vergüenza y aislamiento social.(AU)

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

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

Marcas do passado: memórias e sentimentos de (ex) portadores de hanseníase residentes em um antigo “leprosário” / The main memories and feelings of ex –leprosy living in an ancient leprosarium

Objetivo: descrever as principais memórias e sentimentos de “ex-portadores” de hanseníase residentes em um antigo “leprosário” localizado na região metropolitana do município de Belém, Estado do Pará. Metodologia: Trata-se de um estudo descritivo e exploratório, com abordagem qualitativa. Os dados foram coletados por meio de entrevistas em profundidade, no período de setembro a outubro de 2016, tendo como amostra de convivência onze (ex) portadores de hanseníase. A análise dos dados foi feita com base na análise de conteúdo de Bardin. Resultados: Emergiram três categorias: do medo à exclusão social: sentimentos diante descoberta da doença; o discurso do medo: isolamento compulsório e segregação familiar; Fantasmas do passado no presente: marcas sociais da doença. Considerações finais: As percepções acerca da doença evidenciam que marcas do passado ainda refletem no cotidiano social. As conotações negativas associadas à doença reforçam o preconceito e o estigma social, geram intensos abalos psíquicos e promovem constantes isolamentos sociais.

Objective: Describe the main memories and feelings of ex –leprosy living in an ancient leprosarium located in the metropolitan region of Belém, State of Pará. Methodology: It is a descriptive and exploratory study with a qualitative approach. The data were collected through in-depth interviews, in the period from September to October of 2016, having as sample of coexistence, eleven ex-leprosy. The analysis of the data was made based content analysis of Bardin. Results: three categories emerged: From fear to social exclusion: feelings on the discovery of the disease; The discourse of fear: compulsory isolation and family segregation; Ghosts of the past in the present: social marks of disease. Conclusion: the perceptions about the disease show that marks of the past still reflect in social everyday life. The negative connotations associated with the disease reinforce prejudice and social stigma, generate intense psychic upsets and promote constant social isolation.

Objetivo: describir las principales memorias y sentimientos de “ex portadores” de lepra residentes en un antiguo “leprosario” ubicado en la región metropolitana del municipio de Belém, Estado de Pará. Metodología: Se trata de un estudio descriptivo y exploratorio, con enfoque cualitativo. Los datos fueron recolectados a través de entrevistas en profundidad, en el período de septiembre a octubre de 2016, con una muestra de convivencia once (ex) portadores de lepra. El análisis de los datos se basó en el análisis de contenido de Bardin. Resultados: Han surgido tres categorias: del miedo a la exclusión social: sentimientos ante descubrimiento de la enfermedad; El discurso del miedo: aislamiento obligatorio y segregación familiar; Fantasmas del pasado en el presente: marcas sociales de la enfermedad. Conclusión: las percepciones acerca de la enfermedad evidencian que las marcas del pasado todavía reflejan en el cotidiano social. Las connotaciones negativas asociadas a la enfermedad refuerzan el prejuicio y el estigma social, generan intensos sacudones psíquicos y promueven constantes aislamientos sociales.

Surveillance of intradomiciliary contacts of leprosy cases: perspective of the client in a hyperendemic municipality / Vigilancia de contactos intradomiciliarias de lepra: perspectiva del usuario en municipio hiper endémico / Vigilância de contatos intradomiciliares de hanseníase: perspectiva do usuário em município hiperendêmico

ABSTRACT Objective: To characterize approach methods for intradomiciliary contacts (IdC) of leprosy cases resident in Northern Brazil, during 2001-2012. Method: A cross-sectional and descriptive study in the state of Rondônia. Included IdC of leprosy cases diagnosed/reported in SINAN-Ministry of Health (MS), 2001-2012. A semi-structured instrument was applied to the IdCs, with six interventions: complete dermatological examination; complete neurological examination; BCG vaccination; instructions for return to the health unit; BCG guidance; and guidance to mobilize other contacts. Results: From a total of 459 IdCs included, failure to perform the dermatological examination was reported by 191 people (41.6%) and the neurological examination, by 252 (54.9%); 138 (30.1%) did not have BCG indicated and 122 (26.6%) did not receive guidelines; 257 (56.0%) were not advised to return for a new evaluation/follow-up and 186 (40.5%) were not asked to mobilize other contacts. Conclusion: Despite the favorable indicators of IdC examination coverage in the state, the evaluation process presents patterns that indicate operational quality failures.

RESUMEN Objetivo: Caracterizar normas de abordaje de contactos intradomiciliarias(CId) de casos de lepra residentes en el Norte de Brasil, de 2001-2012. Método: Estudio transversal y descriptivo en el estado de Rondônia. Incluidos CId de casos de lepra diagnosticados/notificados en SINAN-Ministerio de Salud (MS), 2001-2012. Se aplicó instrumento semi estructurado a los CId verificándose 6 intervenciones: examen dermatológico completo; examen neurológico completo; vacunación BCG; orientación para retorno a la unidad de salud; orientación sobre BCG y orientación para movilizar otros contactos. Resultados: Fueron incluidos 459 CId. La no realización del examen dermatológico fue referida por 191 personas (41,6%) y el neurológico, por 252 (54,9%), 138(30,1%) no tuvieron la BCG indicada y 122 (26,6%) no recibieron orientaciones, 257 (56,0%) no fueron orientados a retornar para nueva evaluación/seguimiento y 186 (40,5%) no fueron orientados para movilización de otros contactos. Conclusión: A pesar de los indicadores favorables de cobertura de examen de CId en el estado, el proceso de evaluación presenta normas que indican fallos operacionales de cualidad.

RESUMO Objetivo: Caracterizar padrões de abordagem de contatos intradomiciliares (CId) de casos de hanseníase residentes no Norte do Brasil, de 2001-2012. Método: Estudo transversal e descritivo no estado de Rondônia. Incluídos CId de casos de hanseníase diagnosticados/notificados no SINAN-Ministério da Saúde (MS), 2001-2012. Aplicou-se instrumento semiestruturado aos CId verificando-se seis intervenções: exame dermatológico completo; exame neurológico completo; vacinação BCG; orientação para retorno à unidade de saúde; orientação sobre BCG e orientação para mobilizar outros contatos. Resultados: Foram incluídos 459 CId. A não realização do exame dermatológico foi referida por 191 pessoas (41,6%) e o neurológico, por 252 (54,9%); 138 (30,1%) não tiveram a BCG indicada e 122 (26,6%) não receberam orientações; 257 (56,0%) não foram orientados a retornar para nova avaliação/seguimento e 186 (40,5%) não foram orientados para mobilização de outros contatos. Conclusão: Apesar dos indicadores favoráveis de cobertura de exame de CId no estado, o processo de avaliação apresenta padrões que indicam falhas operacionais de qualidade.

Surveillance of intradomiciliary contacts of leprosy cases: perspective of the client in a hyperendemic municipality.

OBJECTIVE: To characterize approach methods for intradomiciliary contacts (IdC) of leprosy cases resident in Northern Brazil, during 2001-2012. METHOD: A cross-sectional and descriptive study in the state of Rondônia. Included IdC of leprosy cases diagnosed/reported in SINAN-Ministry of Health (MS), 2001-2012. A semi-structured instrument was applied to the IdCs, with six interventions: complete dermatological examination; complete neurological examination; BCG vaccination; instructions for return to the health unit; BCG guidance; and guidance to mobilize other contacts.Results: From a total of 459 IdCs included, failure to perform the dermatological examination was reported by 191 people (41.6%) and the neurological examination, by 252 (54.9%); 138 (30.1%) did not have BCG indicated and 122 (26.6%) did not receive guidelines; 257 (56.0%) were not advised to return for a new evaluation/follow-up and 186 (40.5%) were not asked to mobilize other contacts. CONCLUSION: Despite the favorable indicators of IdC examination coverage in the state, the evaluation process presents patterns that indicate operational quality failures.

Factors preventing early case detection for women affected by leprosy: a review of the literature.

BACKGROUND: Although leprosy can affect both sexes equally, it is globally reported that men are affected, or simply report, more often than females at the average ratio of 2:1. If cases are simply not being reported, women may be suffering in silence more often than men, and, therefore, understanding the social reasons for this in a number of countries could support the prevention of long-term disabilities caused as a result of leprosy. OBJECTIVES: The objective of this review is to recognise the current academic literature surrounding the potential factors for late diagnosis of women affected by leprosy, giving possible explanations for the 2:1 gender disparity observed in case detection globally. It is hoped that health practitioners will become more equipped to recognise these barriers and ensure they are doing whatever possible to encourage women to report the early symptoms of leprosy. METHODS: The review used a systematic search process in order to identify gender-related publications using robust research, useful for gleaning a cross-cultural perception of issues women may confront on the prospect of a diagnosis of leprosy. RESULTS: Identifying 12 publications from just five countries, the review found there to be four overarching areas which may be considered barriers more often faced by women: societal stigma; women's dependence and low status; self-stigmatising attitudes; and the gender insensitivity of leprosy services. CONCLUSION: Stigma surrounding leprosy experienced from these four overarching areas can all be attributed to the later diagnosis of women affected by leprosy, in relation to their male counterparts. The need for future research surrounding the specific experience of women affected by leprosy is pressing.

Significado da doença para mulheres com hanseníase / Leprosy: the meaning of the disease for women who carry it / Significado de la enfermedad para mujeres con lepra

Objetivo: analisar o significado da Hanseníase para 28 mulheres diagnosticadas com tal afecção que se encontravam em acompanhamento em um Serviço de Infectologia, situado na cidade de Petrolina-PE, Brasil. Método: os dados foram coletados por meio de entrevista individual e avaliados aplicando-se a técnica de Análise de Conteúdo. Resultados: os relatos verbais revelaram que a doença provocava alterações na vida cotidiana referente aos aspectos familiares, profissionais e econômicos, além de afetar a imagem corporal que as mulheres tinham a respeito de si mesmas, estando o preconceito ainda presente nas relações sociais e familiares. A poliquimioterapia foi vista como algo positivo, mas que causa desconforto, sendo que algumas mulheres não se sentiam curadas de fato ao final do tratamento. Conclusão: a Hanseníase afeta a vida das mulheres sob diferentes aspectos, e pessoas menos favorecidas economicamente se encontram mais vulneráveis à doença.

Aim: to analyze the meaning of leprosy for 28 women who were diagnosed with this disease and under medical supervision in an infectology service located in Petrolina, Pernambuco, Brazil. Method: the data were collected through individual interviews and its processing happened in virtue of content analysis technique. Results: the verbal reports revealed that the disease caused changes in daily life in familiar, professional and economic aspects. The disease also affected the body image that women had about themselves, which indicated that prejudice is still present in social and familial relations. Multidrug therapy was seen as something positive, but it caused much discomfort and some women did not feel really cured at the end of the treatment. Conclusion: Leprosy affects the lives of women in different aspects and economically disadvantaged people are more vulnerable to the disease

Objetivo: analizar el significado de la lepra para 28 mujeres diagnosticadas con esta enfermedad, que se encotraban en atención médica en un servicio de Infectologia ubicado en Petrolina, Pernambuco, Brasil. Método: los datos fueron recolectados por medio de entrevistas individuales y fueron evaluados por medio de la aplicación de la técnica de Análisis de Contenido. Resultados: los relatos revelaron que la enfermedad provocó cambios en la vida cotidiana en relación a los aspectos familiares, profesionales y económicos, además de haber influido en la imagen del cuerpo que las mujeres tenían sobre sí mismas, y estando el perjuicio presente en las relaciones sociales y familiares. La poliquimioterapia fue vista como algo positivo, pero provoca efectos colaterales, y algunas mujeres no se sentían realmente curadas en el final del tratamiento. Conclúsion: se llegó a la conclusión de que la lepra afecta la vida de las mujeres en diferentes aspectos y personas en desventaja económica son más vulnerables a la enfermedad.

Illness perceptions of leprosy-cured individuals in Surinam with residual disfigurements - "I am cured, but still I am ill".

Objective Leprosy has rarely been the subject of health psychology research despite its substantial impact. Our aim was to explore illness perceptions in patients and their health care providers in Surinam. The Common Sense Model (CSM) was the guiding theoretical model. Design Patients with biomedically cured leprosy and their health care providers completed the B-IPQ and took part in semi-structured interviews. The literature on illness perceptions in patients with leprosy was reviewed. Main outcome measures Patients' B-IPQ scores were compared with samples of patients with other (chronic) illnesses, and with health care providers completing the questionnaire as if they were visibly disfigured patients. Quotations from the semi-structured interviews were used to contextualise the illness perceptions. Results Patients' B-IPQ scores reflected the chronic nature of leprosy and were comparable with those with other chronic illnesses. Health care providers perceived leprosy to have a greater negative impact than did the patients. Perceived understanding of causes differed considerably between patients and health care providers. Conclusion Leprosy continues to be experienced as an illness with major psychological and social consequences such as stigmatisation, even after biomedical cure. Interventions that target patients, health care providers, and society at large may help reduce perceived shame and stigma. The CSM is a helpful theoretical model in studying this population.

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.

A lesão social da hanseníase em mulheres curadas / The social lesion of leprosy in cured women

Introdução: O Brasil é o segundo país no mundo em número de casos novos de hanseníase, doença infecciosa, com alto poder incapacitante e historicamente ligada preconceito, estigma e castigo e à exclusão social pela política sanitária de contenção da doença até meados do século passado. Avanços tecnológicos e mudanças na política de controle da doença conduziram a possibilidade de tratamento ambulatorial, alta por cura e experiências de participação em grupos de apoio, entretanto, questiona-se como pacientes que receberam alta por cura percebem, o processo de adoecimento, atribuem significado à cura e vivenciam marcas do estigma e do preconceito relacionado à doença. Objetivos: Identificar relações que mulheres que tiveram hanseníase estabelecem entre essa enfermidade e suas implicações para a vida cotidiana de cada uma; identificar significados atribuídos, por mulheres que tiveram hanseníase, ao processo de adoecimento; identificar tipos de relações das mulheres com a participação em um grupo de apoio; desvelar sentidos atribuídos pelas mulheres à experiência da cura da hanseníase e às consequentes lesões sociais. Metodologia: Foram realizadas entrevistas com quinze mulheres, ex-pacientes e membros do Grupo de Apoio a Mulheres Atingidas pela Hanseníase- GAMAH que desenvolve atividades educativas de autocuidados, profissionalização e geração de renda. Resultados: Os relatos das mulheres estão relacionados à hanseníase no cotidiano, com as narrativas sobre a complexidade do diagnóstico, apresentando a dor como marca mais significativa. Outra categoria resgata o retardo no diagnóstico e se explica por ser dado por profissionais não especialistas, pelo desconhecimento dos sintomas da doença pelas mulheres, ou ainda pela negação de estar doente. O apoio social encontrado no GAMAH configura outro agrupamento de ideias, mostrando o apoio na forma de assistencialismo, a forma que conheceu o GAMAH, e o mesmo como espaço de compartilhamento de vivências. Outro grupo de respostas se refere às sequelas permanentes, como complicações depois da hanseníase, sobre o tratamento e o cotidiano, e também sobre os cuidados com o corpo. E o ultimo agrupamento de respostas, refere-se aos processos de alta e os significados da cura da hanseníase, a crença na cura em contraponto com a descrença na cura, com uso de alguns indicadores para justificar as respostas, e ainda relatos de estigmas e preconceitos como representação da lesão social. Considerações Finais Diante do significado da vivência das mulheres com a hanseníase e dos desafios das mesmas na vida cotidiana para superar o que se chamou de lesões sociais, desvelou-se a questão que parece relacionada não somente a insuficiente implementação de políticas públicas, mas igualmente a problemas de acolhimento para a multiplicidade de cuidados que a hanseníase exige em termos clínicos e sociais, com ações que vão além da perspectiva de contenção da doença

Brazil is the second country in the world in terms of number of new cases of leprosy, an infectious disease, with high incapacitating power and historically linked to prejudice, stigma and punishment, and to social exclusion by the health politics to contain the disease until the middle of the last century. Technological advances and changes in the control politics of the disease have led to the possibility of outpatient treatment, high cure and experiences of participation in support groups, however, it is questioned how patients who were discharged by cure perceive, the process of illness, give meaning To cure and experience marks of stigma and prejudice related to the disease. To identify relationships that women who had leprosy establish between this disease and its implications for the daily life of each one; To identify meanings attributed, by women who had leprosy, to the process of illness; Identify types of women's relationships with participation in a support group; Reveal the senses attributed by women to the experience of the cure of leprosy and the consequent social injuries. Interviews were conducted with fifteen women, former patients and members of the Support Group for Women Affected by Leprosy - GAMAH - who develop educational activities of self-care, professionalization and income generation. The reports of women are related to leprosy in daily life, with narratives about the complexity of the diagnosis, presenting pain as the most significant brand Another category rescues the delay in diagnosis and is explained by being given by non-specialists, by the lack of knowledge of the symptoms of the disease by women, or by the denial of being sick. The social support found in GAMAH sets up another grouping of ideas, showing the support in the form of assistance, the form that knew the GAMAH, and the same as space of sharing of experiences. Another group of responses portrays permanent sequelae, such as complications after leprosy, treatment and daily life, and body care. And the last grouping of responses refers to discharge processes and the meanings of the cure of leprosy, belief in cure versus disbelief in cure, use of some indicators to justify responses, and reports of stigma and Prejudices as a representation of the social injury. In view of the significance of women living with leprosy and their daily challenges in overcoming what has been called social injury, the issue that seems to be related not only to the insufficient implementation of public policies, but also to the Problems of reception for the multiplicity of care that leprosy requires in clinical and social terms, with actions that go beyond the perspective of containment of the disease

Current Perceptions and Practices (KAP) about Leprosy among Leprosy Patients: A Comparative Study between High Prevalent & Low Prevalent Districts of West Bengal.

A cross sectional observational study was conducted to assess knowledge, attitude and practices about leprosy among leprosy patients in six districts of West Bengal. Total patients selected for the study were 300; of them 185 patients were from three high prevalent districts and 115 from three low prevalent districts of West Bengal. 56.33% patients were male and 43.67% were female. Most of the patients (85.67%) belonged to Hindu community and 60% from socially backward group. 64.33% patients lived below poverty line. Thirty five percentage of patients had correct knowledge that leprosy is caused by a bacteria. Patients from high prevalent districts (41.62%) have better knowledge than those from low prevalent areas (26.09%). Difference was found to be statistically significant (p = 0.006). Correct knowledge about spread of leprosy through cough & sneezing, of the patients from high prevalent districts (30.81%) was more than those from low prevalent districts (14.78%) (p = 0.001). 74.05% patients from high prevalent districts could tell one or other forms of clinical presentation of a leprosy patients, while 56.52% from low prevalent areas could mention it correctly (p = 0.01). About infectiousness, duration of treatment, complications, patients from high prevalent districts showed better knowledge that those from low prevalent districts. Similarly, Attitude of the patients towards leprosy was found to be more adverse in low prevalent areas. 90% patients have idea that leprosy was curable, but only 51.67% patients heard about MDT. Place of residence (high prevalent districts) & level of education (secondary & above) attributed to better knowledge score of the patients, whereas Place of residence (high prevalent districts) & age (younger age group) attributed to better attitude score of the patients.

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.

Perceived Stigma towards Leprosy among Community Members Living Close to Nonsomboon Leprosy Colony in Thailand.

BACKGROUND: Interpretation of Leprosy as a sickness differs among society. The set of beliefs, knowledge and perceptions towards a disease play a vital role in the construction of stigma towards a disease. The main purpose of this study was to explore the extent and correlates of the perceived stigma towards leprosy in the community living close to the leprosy colony in Non Somboon region of Khon Kaen Province of Thailand. METHODS: A cross-sectional study was conducted among 257 leprosy unaffected community participants, above the age of 18 who were living close to the Leprosy colony in Non Somboon region of Thailand. Each participant was asked a questionnaire containing characteristics of the participants in terms of socio-demographic background and knowledge regarding the disease. In addition perceived stigma towards leprosy was measured using EMIC (Explanatory Model Interview Catalogue) questionnaire. RESULTS: Among EMIC items, shame or embarrassment in the community due to leprosy was felt by 54.5%, dislike to buy food from leprosy affected persons were 49.8% and difficulty to find work for leprosy affected persons were perceived by 47.1%. Higher total EMIC score was found in participants age 61 years or older (p = 0.021), staying longer in the community (p = 0.005), attending fewer years of education (p = 0.024) and who were unemployed (p = 0.08). Similarly, perceptions about leprosy such as difficult to treat (p = 0.015), severe disease (p = 0.004) and punishment by God (p = 0.011) were significantly associated with higher perceived stigma. CONCLUSIONS: Perceived stigma towards leprosy was found highest among participants with age 61 years or older, longer duration of stay in community close to the leprosy colony, lower duration of education and participants who were unemployed had higher perceived stigma. Similarly, participants with perceptions of leprosy such as difficult to treat, severe disease and punishment by God had higher perceived stigma towards leprosy. There is an urgent need of stigma reduction strategies focused on education and awareness concerning leprosy.

Quality of life of leprosy sequelae patients living in a former leprosarium under home care: univariate analysis.

INTRODUCTION: Quality of life (QoL) is a broad concept that has become more important during the last decades. Despite this fact, few studies have been conducted to evaluate leprosy patients, none of which has specifically addressed patients with leprosy sequels submitted to home care. PURPOSE: To evaluate the QoL of leprosy sequel bearers and the factors that may affect their perception of their condition. METHODS: WHOQoL-BREF, a questionnaire developed by the World Health Organization, was administered to 32 people living in the coverage area of a former leprosarium. Patient socio-demographic and care-related caregiver data were collected. Activities of daily living and Instrumental Activities of Daily Living Scales were used to evaluate autonomy. Mini-Mental Status Examination was used to evaluate cognitive status. Simple linear regression analyses were conducted using SPSS Statistical Software and the non-standardized beta values were presented. RESULTS: The patients were mainly female, widowed, elderly, with bone sequels; all had impairment of at least one Instrumental Daily Living Activity. QoL scores were 12.35 in a 4-20 scale (52.18 %) in the physical domain, 12.95 (55.94 %) in the psychological health domain, 13.18 (57.40 %) in the environment domain, and 16.09 (75.56 %) in the social domain. Univariate analysis suggests that instrumental daily activity "capacity of shopping," marital status, and caregiver age were associated with self-perceived QoL. Data were also compared to those from other studies. CONCLUSION: Individuals affected by leprosy had low QoL scores in the physical and psychological health domains and high scores in the social domain. The factors that impact their QoL seem to be related to specific conditions found in the leprosarium and the previous isolation practices.