Elders in a former brazilian leprosy colony: clinical and functional vulnerability and vocal and hearing self-perception. / Idosos de uma antiga colônia brasileira de hanseníase: vulnerabilidade clínico-funcional e autopercepção vocal e auditiva.

PURPOSE: Verifying the association between clinical-functional vulnerability and vocal and auditory self-perception in seniors presenting a history of leprosy. METHODS: Cross-sectional study encompassing 117 elderly people from an old leprosy colony in southeastern Brazil. The research analyzed sociodemographic information and the following protocols: Clinical-Functional Vulnerability Index-20 (IVCF-20), Hearing Handicap Inventory for the Elderly Screening Version (HHIE-S), Screening for Vocal Change in the Elderly (RAVI) and Vocal Handicap Index 10 (IDV-10). For data analysis, the ordinal logistic regression model of proportional odds was used. RESULTS: 37.6% of the elderly were classified as robust, 35.0% at risk of fragility and 27.4% as frail. Vocal alteration (RAVI), vocal handicap (IDV-10) and restriction to auditory participation (HHIE-S) were observed in 65.8%, 24.8% and 48.7% respectively, in the studied population. In the multivariate analysis, it was found the oldest group (OR = 1.11; CI: 1.05-1.16) and those with vocal handicap (OR = 4.11; 95% CI: 1.77-9.56) were more likely to be classified as at risk of fragility or already fragile. The simultaneous presence of vocal handicap and restriction of auditory participation (46.9%) was larger among frail elderly people. CONCLUSION: The increasing age of the elderly and the presence of vocal handicap is associated with greater clinical-functional vulnerability. The high prevalence of both voice and hearing disorders reinforces the need for the speech therapist to be included in public policies, directed towards caring for people with a history of leprosy.

OBJETIVO: Verificar a associação entre vulnerabilidade clínico-funcional e autopercepção vocal e auditiva de idosos com histórico de hanseníase. MÉTODO: Estudo transversal desenvolvido com 117 idosos de uma antiga colônia de hanseníase no sudeste do Brasil. Foram analisadas informações sociodemográficas, e os protocolos: Índice de Vulnerabilidade Clínico-funcional (IVCF-20), Hearing Handicap Inventory for the Elderly Screening Version (HHIE-S), Rastreio de Alteração Vocal em Idosos (RAVI) e Índice de Desvantagem Vocal 10 (IDV-10). O IVCF-20 classifica o idoso como robusto, em risco de fragilização e frágil. Para análise dos dados utilizou-se o modelo de regressão logística ordinal de chances proporcionais. RESULTADOS: 37,6% dos idosos foram classificados em robustos, 35,0% em risco de fragilização e 27,4% em frágeis. A alteração vocal (RAVI), desvantagem vocal (IDV-10) e restrição à participação auditiva (HHIE-S) foram observadas em 65,8%, 24,8% e 48,7% dos idosos, respectivamente. Na análise multivariada, verificou-se que idosos mais velhos (OR=1,11; IC: 1,05-1,16) e com desvantagem vocal (OR=4,11; IC 95%: 1,77-9,56) tiveram maiores chances de serem classificados como em risco de fragilização ou frágil. A presença simultânea de desvantagem vocal e restrição à participação auditiva (46,9%) foi maior entre os idosos frágeis. CONCLUSÃO: O aumento da idade dos idosos e a presença de desvantagem vocal tem associação com a maior vulnerabilidade clínico-funcional. As altas prevalências de alterações vocais e auditivas reforçam a necessidade da inclusão do fonoaudiólogo nas políticas públicas voltadas ao cuidado de pessoas com histórico de hanseníase.

Idosos de uma antiga colônia brasileira de hanseníase: vulnerabilidade clínico-funcional e autopercepção vocal e auditiva / Elders in a former brazilian leprosy colony: clinical and functional vulnerability and vocal and hearing self-perception

RESUMO Objetivo Verificar a associação entre vulnerabilidade clínico-funcional e autopercepção vocal e auditiva de idosos com histórico de hanseníase. Método Estudo transversal desenvolvido com 117 idosos de uma antiga colônia de hanseníase no sudeste do Brasil. Foram analisadas informações sociodemográficas, e os protocolos: Índice de Vulnerabilidade Clínico-funcional (IVCF-20), Hearing Handicap Inventory for the Elderly Screening Version (HHIE-S), Rastreio de Alteração Vocal em Idosos (RAVI) e Índice de Desvantagem Vocal 10 (IDV-10). O IVCF-20 classifica o idoso como robusto, em risco de fragilização e frágil. Para análise dos dados utilizou-se o modelo de regressão logística ordinal de chances proporcionais. Resultados 37,6% dos idosos foram classificados em robustos, 35,0% em risco de fragilização e 27,4% em frágeis. A alteração vocal (RAVI), desvantagem vocal (IDV-10) e restrição à participação auditiva (HHIE-S) foram observadas em 65,8%, 24,8% e 48,7% dos idosos, respectivamente. Na análise multivariada, verificou-se que idosos mais velhos (OR=1,11; IC: 1,05-1,16) e com desvantagem vocal (OR=4,11; IC 95%: 1,77-9,56) tiveram maiores chances de serem classificados como em risco de fragilização ou frágil. A presença simultânea de desvantagem vocal e restrição à participação auditiva (46,9%) foi maior entre os idosos frágeis. Conclusão O aumento da idade dos idosos e a presença de desvantagem vocal tem associação com a maior vulnerabilidade clínico-funcional. As altas prevalências de alterações vocais e auditivas reforçam a necessidade da inclusão do fonoaudiólogo nas políticas públicas voltadas ao cuidado de pessoas com histórico de hanseníase.

ABSTRACT Purpose Verifying the association between clinical-functional vulnerability and vocal and auditory self-perception in seniors presenting a history of leprosy. Methods Cross-sectional study encompassing 117 elderly people from an old leprosy colony in southeastern Brazil. The research analyzed sociodemographic information and the following protocols: Clinical-Functional Vulnerability Index-20 (IVCF-20), Hearing Handicap Inventory for the Elderly Screening Version (HHIE-S), Screening for Vocal Change in the Elderly (RAVI) and Vocal Handicap Index 10 (IDV-10). For data analysis, the ordinal logistic regression model of proportional odds was used. Results 37.6% of the elderly were classified as robust, 35.0% at risk of fragility and 27.4% as frail. Vocal alteration (RAVI), vocal handicap (IDV-10) and restriction to auditory participation (HHIE-S) were observed in 65.8%, 24.8% and 48.7% respectively, in the studied population. In the multivariate analysis, it was found the oldest group (OR = 1.11; CI: 1.05-1.16) and those with vocal handicap (OR = 4.11; 95% CI: 1.77-9.56) were more likely to be classified as at risk of fragility or already fragile. The simultaneous presence of vocal handicap and restriction of auditory participation (46.9%) was larger among frail elderly people. Conclusion The increasing age of the elderly and the presence of vocal handicap is associated with greater clinical-functional vulnerability. The high prevalence of both voice and hearing disorders reinforces the need for the speech therapist to be included in public policies, directed towards caring for people with a history of leprosy.

Oral health conditions in leprosy cases in hyperendemic area of the Brazilian Amazon.

Leprosy is a hyperendemic chronic condition in the Rondônia State . Despite the significant impact of oral health on the quality of life and clinical evolution of leprosy patients, systematic evaluation of oral health status has been neglected. To analyze the dental-clinical profile, self-perceived oral health and dental health service access of leprosy cases in the municipality of Cacoal in Rondônia State , North Brazil, from 2001 to 2012. A descriptive, cross-sectional study design was performed based on dental evaluation and standardized structured instruments. We investigated clinically assessed and self-perceived oral health status, as well as dental health service access. A total of 303 leprosy cases were included; 41.6% rated their oral health as good, and 42.6% reported being satisfied with their oral health. Self-reported loss of upper teeth was 45.5%. The clinical evaluation revealed that 54.5% had active caries. Most (97.7%) cases reported having been to the dentist at least once in their life and 23.1% used public health services. The poor standard of oral health in this population may increase the risk for leprosy reactions, consequently reducing quality of life. Low access to public health dental services and poor self-perceived oral health reinforce the need to achieve comprehensive health care in this population.

Sintomas depressivos secundário ou reativo em adultos doentes com hanseníase / Secondary or reactive depressive symptoms in adult patients with leprosy / Síntomas depresivos secundarios o reactivos en pacientes adultos con lepra

Objetivo: investigar a presença dos sintomas depressivos em adultos doentes com hanseníase. Método: estudo descritivo, com abordagem quantitativa, realizado em dois programas de controle de hanseníase, em São Luís (MA), Brasil, com 47 pessoas com hanseníase, notificadas e em registro ativo. A coleta de dados foi realizada com um questionário (Escala CES-D) para avaliação de sintomas depressivos. Em seguida, os dados foram armazenados no software Epi-info versão 7.0, analisados, apresentados em tabelas e discutidos com a literatura. Resultados: a maioria dos participantes estava na fase de transição entre mania e depressão, com predominância da fase depressiva e presença discreta da ideação suicida. Conclusão: os sintomas depressivos secundários foram frequentes na população de estudo, havendo necessidade de novas pesquisas, principalmente no que se refere ao surgimento e desenvolvimento de abordagem multiprofissional, otimização de promoção e educação a saúde.

Objective: to investigate the presence of depressive symptoms in adult patients with leprosy. Method: descriptive study with a quantitative approach, performed in two leprosy control programs, in São Luís (MA), Brazil, with 47 people with leprosy, reported and in the active record. Data collection was performed using a questionnaire (CES-D Scale) for evaluation of depressive symptoms. The data were then stored in the Epi-Info version 7.0 software, analyzed, presented in tables and discussed with the literature. Results: the majority of the participants were in the transition phase between mania and depression, with predominance in the depressive phase and a discreet presence of suicidal ideation. Conclusion: secondary depressive symptoms were common in the study population, demonstrating the need for further studies, especially with regard to the emergence and development of a multidisciplinary approach, optimizing health promotion and education.(AU)

Objetivo: investigar la presencia de síntomas depresivos en pacientes adultos con lepra. Método: estudio descriptivo con un enfoque cuantitativo, realizado en dos programas de control de la lepra en São Luís (MA), Brasil, con 47 personas con lepra, y se informó en el registro activo. La recolección de datos se realizó con un cuestionario (escala CES-D) para la evaluación de los síntomas depresivos. Em seguida, datos eran armazenados no software Epi-info version 7.0, bem analisado e discutido apresentados em tabelas com literatura. Resultados: la mayoría de los participantes estaban en transición entre la manía y la depresión, con un predominio de la fase depresiva y discreta presencia de ideación suicida. Conclusión: los síntomas depresivos secundarios fueron comunes en la población de estudio, existe la necesidad de una mayor investigación, especialmente en relación con la aparición y el desarrollo de un enfoque multidisciplinario, la optimización de la promoción y educación para la salud.(AU)

'People like me don't make things like that': Participatory video as a method for reducing leprosy-related stigma.

The Stigma Assessment and Reduction of Impact project aims to assess the effectiveness of stigma-reduction interventions in the field of leprosy. Participatory video seemed to be a promising approach to reducing stigma among stigmatized individuals (in this study the video makers) and the stigmatisers (video audience). This study focuses on the video makers and seeks to assess the impact on them of making a participatory video and to increase understanding of how to deal with foreseeable difficulties. Participants were selected on the basis of criteria and in collaboration with the community health centre. This study draws on six qualitative methods including interviews with the video makers and participant observation. Triangulation was used to increase the validity of the findings. Two videos were produced. The impact on participants ranged from having a good time to a greater sense of togetherness, increased self-esteem, individual agency and willingness to take action in the community. Concealment of leprosy is a persistent challenge, and physical limitations and group dynamics are also areas that require attention. Provided these three areas are properly taken into account, participatory video has the potential to address stigma at least at three levels - intrapersonal, interpersonal and community - and possibly more.

[Health-related quality of life, depression, and self-esteem in adolescents with leprosy-affected parents: results of a cross-sectional study in Nepal].

Leprosy is a chronic infectious disease that has an impact on the Health-Related Quality of Life (HRQOL) of sufferers as well as their children. To date, no study has investigated the effects of parental leprosy on the well-being of adolescent children. A cross-sectional study was conducted in the Lalitpur and Kathmandu districts of Nepal. Adolescents with leprosy-affected parents (n=102; aged 11-17 years) and those with parents unaffected by leprosy (n=115; 11-17 years) were investigated. Self-reported data from adolescents were collected using the Kinder Lebensqualität Fragebogen (KINDLR) questionnaire to assess HRQOL, the Center for Epidemiological Studies-Depression Scale (CES-D), and the Rosenberg Self-esteem Scale (RSES). Analysis of covariance (ANCOVA) was used to compare scores between the two groups. Multiple regression analysis was conducted to explore the determinants of HRQOL for adolescents with leprosy-affected parents. ANCOVA revealed that the KINDLR and RSES scores were significantly lower among adolescents with leprosy-affected parents compared with unaffected parents. The CES-D score was significantly higher among adolescents with leprosy-affected parents than for adolescents with unaffected parents. The KINDLR scores for adolescents with both parents affected were significantly lower than the scores for those with one parent affected. Multiple regression analysis revealed that adolescents with leprosy-affected parents who had higher levels of depressive symptoms were more likely to have lower KINDLR scores. A similar result was seen for adolescents where both parents had leprosy. Adolescents with leprosy-affected parents had higher levels of depressive symptoms, lower levels of self-esteem, and lower HRQOL compared with adolescents whose parents were unaffected by leprosy.

Estar/ser no mundo com hanseníase: qual é o meu lugar? / To be/to exist in the world with leprosy: what is my place?

As pessoas vivendo com Hanseníase têm sua autoimagem maculada pelas lesões causadas pela doença, reações hansênicas e pela discriminação. Apesar de ser um problema antigo e de haver campanhas educativas para combatê-lo, o estigma está presente no cotidiano destas pessoas e desafia os profissionais que tem uma lacuna em seu saber no que concerne ao manejo do mesmo na sociedade e em seu fazer profissional. Este artigo objetiva refletir sobre o estigma e o cuidado da enfermagem a partir da fenomenologia ontológica de Martin Heidegger. O cuidado humanístico na perspectiva de ser-com-outro, de reconhecer o cuidado como ontológico e a negação do mesmo como desenraizante e desumanizante se coloca como alternativa para este enfrentamento e superação trazendo para a enfermagem o outro como parceiro na construção do cuidado, como um ser humano que vive aquele instante do encontro com o profissional em um ser-no-mundo repleto de significado e possibilidades.

People living with leprosy have their self-image blemished due to injuries caused by the disease, leprosy reactions and discrimination. Despite being an old problem and the existence of educational campaigns to combat it, the stigma is present in the daily lives of these people and is a challenge for professionals who lack knowledge regarding the management of the disease in society and in their professional work. This article aims to reflect on the stigma and nursing care from Martin Heidegger’s ontological phenomenology. Humanistic care from the perspective of being-with-others, of recognizing care as ontological and denying that it is rooted and dehumanizing is an alternative to face and overcome this condition. For the nursing staff, this brings the other as a partner in the construction of care, as a human being who lives that moment of meeting the professional in a being-in-the-world full of meaning and possibilities.

The experiences and attitudes of people affected by leprosy who voluntarily undertake leprosy services in Nepal.

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.

Internalized Stigma of Mental Illness (ISMI) scale: a multinational review.

The Internalized Stigma of Mental Illness (ISMI) scale is a 29-item questionnaire measuring self-stigma among persons with psychiatric disorders. It was developed with substantial consumer input and has been widely used, but its psychometric qualities have not been comprehensively evaluated across multiple versions. Here we review the 55 known versions, and provide the 47 available versions, including: Arabic, Armenian, Bengali, Bulgarian, Chinese (Mainland, Taiwan, Hong Kong), Croatian, Dutch, English (USA, South Africa), Estonian, Farsi, Finnish, French, German, Greek, Hebrew, Hindi, Japanese, Khmer, Korean, Lithuanian, Lugandan, Maltese, Polish, Portuguese (Portugal, Brazil), Romanian, Russian, Samoan, Slovenian, Spanish (Spain), Swahili, Swedish, Tongan, Turkish, Urdu, and Yoruba, and qualitative English and Swahili versions, as well as versions for depression, schizophrenia, substance abuse, eating disorders, epilepsy, inflammatory bowel disease, leprosy, smoking, parents and caregivers of people with mental illness, and ethnicity. The various versions show reliability and validity across a wide range of languages, cultures, and writing systems. The most commonly reported findings of studies using the ISMI are that internalized stigma correlates with higher depression, lower self esteem, and higher symptom severity. Initial studies of ways to reduce internalized stigma are promising and warrant further investigation.

[Self-perception of people afflicted with leprosy regarding their oral health and the need for treatment]. / Autopercepção de pessoas acometidas pela hanseníase sobre sua saúde bucal e necessidade de tratamento.

Leprosy is an infectious disease that has an impact from a physical, social and psychological standpoint. The scope of this study was to assess the self-perception on oral health and need for treatment in leprosy patients in the city of Fortaleza, State of Ceará, Brazil. This is a cross-sectional and descriptive study, where 100 leprosy patients were given a semi-structured questionnaire to fill out. The results of the bivariate analysis between need for treatment and socio-economic characteristics showed that only education revealed a statistical association (p=0.000). An association was verified between the classification of oral health and self-perception of need for treatment (p=0.05). With respect to the self-perception of oral health, 36% of the researched subjects classified their oral health as good. The self-perception of leprosy patients regarding their oral health and need for treatment, together with a clinical evaluation, should serve as a guide for the drafting of public policies that aim to foment more effective dental treatment for these patients.

A comparison of stigma among patients with leprosy in rural Tanzania and urban United States: a role for public health in dermatology.

BACKGROUND: Leprosy is a chronic infection of the skin and peripheral nerves caused by the bacterium Mycobacterium leprae, which causes peripheral insensitivity and disfigurements of the skin, limbs, and digits. Social stigma is a common consequence of leprosy and may differ according to level of physical disfigurement and geographic location. The objective of this study was to assess social stigma encountered by patients with leprosy in clinical settings located in rural Tanzania and urban USA and to compare the social stigma reported in these regions. METHODS: A total of 56 respondents were recruited from one leprosy inpatient facility in Shirati, Tanzania (n = 28), and one outpatient clinic in Los Angeles, USA (n = 28). Cross-sectional data were obtained from face-to-face interviews, which were conducted with respondents at each clinic location. Measures of perceived stigma were assessed in family relationship, vocational, social interaction, and interpersonal contexts. RESULTS: Patients in Tanzania, as compared with those in the USA, reported significantly higher levels of stigma in family relationship and vocational contexts. Tanzanian patients also reported higher levels of stigma in social interaction and self-esteem contexts, but these differences were marginally significant and may reflect the small sample size. CONCLUSIONS: Leprosy-related social stigma is a major problem in regions of both developed and developing countries; however, patients with leprosy in developing countries reported higher levels of stigma in four social contexts. A public health role in dermatology is discussed as an agent of early diagnosis, control, and education in order to reduce social stigma and promote social rehabilitation.

Autopercepção de pessoas acometidas pela hanseníase sobre sua saúde bucal e necessidade de tratamento / Self-perception of people afflicted with leprosy regarding their oral health and the need for treatment

A hanseníase é uma doença infecciosa que produz impacto do ponto de vista físico, social e psicológico. O propósito deste estudo foi avaliar a autopercepção sobre saúde bucal e a necessidade de tratamento em pacientes com hanseníase no Município de Fortaleza (CE), Brasil. Trata-se de um estudo transversal e descritivo, onde 100 pacientes com hanseníase foram submetidos a questionário semiestruturado. Os resultados da análise bivariada entre necessidade de tratamento e características socioeconômicas mostrou que apenas a escolaridade apresentou associação estatística (p = 0,000). Verificou-se associação entre a classificação da saúde bucal e autopercepção da necessidade de tratamento (p = 0,05). Com relação à autopercepção em saúde bucal, 36% dos sujeitos pesquisados classificaram sua saúde bucal como boa. A autopercepção do paciente com hanseníase quanto a sua saúde bucal e necessidade de tratamento deve, juntamente com uma avaliação clínica, servir de guia para a execução de políticas públicas que visem a favorecer um tratamento odontológico mais efetivo para esses pacientes.

Leprosy is an infectious disease that has an impact from a physical, social and psychological standpoint. The scope of this study was to assess the self-perception on oral health and need for treatment in leprosy patients in the city of Fortaleza, State of Ceará, Brazil. This is a cross-sectional and descriptive study, where 100 leprosy patients were given a semi-structured questionnaire to fill out. The results of the bivariate analysis between need for treatment and socio-economic characteristics showed that only education revealed a statistical association (p=0.000). An association was verified between the classification of oral health and self-perception of need for treatment (p=0.05). With respect to the self-perception of oral health, 36% of the researched subjects classified their oral health as good. The self-perception of leprosy patients regarding their oral health and need for treatment, together with a clinical evaluation, should serve as a guide for the drafting of public policies that aim to foment more effective dental treatment for these patients.

Health-related quality of life, depression, and self-esteem in adolescents with leprosy-affected parents: results of a cross-sectional study in Nepal.

BACKGROUND: Leprosy is a chronic infectious disease that has an impact on the Health-Related Quality of Life (HRQOL) of sufferers as well as their children. To date, no study has investigated the effects of parental leprosy on the well-being of adolescent children. METHODS: A cross-sectional study was conducted in the Lalitpur and Kathmandu districts of Nepal. Adolescents with leprosy-affected parents (n = 102; aged 11-17 years) and those with parents unaffected by leprosy (n = 115; 11-17 years) were investigated. Self-reported data from adolescents were collected using the Kinder Lebensqualität Fragebogen (KINDLR) questionnaire to assess HRQOL, the Center for Epidemiological Studies-Depression Scale (CES-D), and the Rosenberg Self-esteem Scale (RSES). Analysis of covariance (ANCOVA) was used to compare scores between the two groups. Multiple regression analysis was conducted to explore the determinants of HRQOL for adolescents with leprosy-affected parents. RESULTS: ANCOVA revealed that the KINDLR and RSES scores were significantly lower among adolescents with leprosy-affected parents compared with unaffected parents. However, the scores of "Friends" and "School" subscales of KINDLR were similar between the two groups. The CES-D score was significantly higher among adolescents with leprosy-affected parents than for adolescents with unaffected parents. The KINDLR scores for adolescents with both parents affected (n = 41) were significantly lower than the scores for those with one parent affected (n = 61). Multiple regression analysis revealed that adolescents with leprosy-affected parents who had higher levels of depressive symptoms were more likely to have lower KINDLR scores. A similar result was seen for adolescents where both parents had leprosy. CONCLUSIONS: Adolescents with leprosy-affected parents had higher levels of depressive symptoms, lower levels of self-esteem, and lower HRQOL compared with adolescents whose parents were unaffected by leprosy. Thus, mental health support programs might be necessary for adolescents with leprosy-affected parents, particularly for adolescents where both parents are leprosy-affected. Further studies with larger sample sizes are necessary to draw decisive conclusions.

Quality of life in vitiligo patients.

Quality of life is defined by the World Health Organization as "individuals' perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns." Often overlooked in the past, it is nowadays considered, in a more holistic view of medicine, a decisive factor to understand the impact of diseases and improve the quality of medical care. Such evaluation is particularly relevant for dermatological diseases, because visibility of the lesions can significantly affect self-esteem and social relationships. Vitiligo represents an emblematic case: often disfiguring and located in visible areas, confused in the past (and, in many world regions, even in the present) with leprosy, often perceived by physicians as a harmless, purely cosmetic problem, it significantly decreases the quality of life of affected persons. After a brief overview on definition, usefulness and methods for the assessment of quality of life, the authors examine the peculiarities of its relationship with skin diseases, particularly vitiligo. The state of the art of knowledge and research in this field is presented, together with data showing usefulness and positive results of a multidisciplinary approach, which adequately keeps into account perceived quality of life, on patient's satisfaction, adherence to treatment protocols and, ultimately, better outcome of treatments. In this context, an important role can be played by support communities, groups of patients and dedicated associations and societies, connected through modern communication networks like the Internet.

Using a clinic based creativity initiative to reduce HIV related stigma at the Infectious Diseases Institute, Mulago National Referral Hospital, Uganda.

BACKGROUND: Stigma has been associated with chronic health conditions such as HIV/AIDS, leprosy, tuberculosis, Mental illness and Epilepsy. Different forms of stigma have been identified: enacted stigma, perceived stigma, and self stigma. Stigma is increasingly regarded as a key driver of the HIV/AIDS epidemic and has a major impact on public health interventions. OBJECTIVES: The initiative was to provide activities in the clinic while patients waited to be seen by healthcare professionals. It was envisaged this would contribute to reduction of clinic based stigma felt by clients. METHODS: This was a repeated cross-sectional survey (October-November 2005 and March-April 2007) that was conducted at the Infectious Diseases Institute clinic (IDC) at Mulago, the national referral hospital in Uganda. We utilized quantitative (survey) and qualitative (key informants, focus group discussions) methods to collect the data. Data were collected on stigma before the creativity initiative intervention was implemented, and a second phase survey was conducted to assess effectiveness of the interventions. RESULTS: Clients who attended the IDC before the creativity intervention were about twice as likely to fear catching an infection as those who came after the intervention. The proportion that had fears to be seen by a friend or relative at the clinic decreased. Thus during the implementation of the Creativity intervention, HIV related stigma was reduced in this clinic setting. CONCLUSIONS: The creativity intervention helped to build self esteem and improved communication among those attending the clinic; there was observed ambiance at the clinic and clients became empowered, with creative, communication and networking skills. Improved knowledge and communication are key in addressing self stigma among HIV positive individuals.

Quality of life among schoolchildren with acne: results of a cross-sectional study.

BACKGROUND: Acne is a common problem in adolescent children and has a considerable impact on their quality of life. AIMS: The purpose of this study was to assess health-related quality of life (HRQoL) among Serbian adolescents with acne, using 2 questionnaires: The Children's Dermatology Life Quality Index (CDLQI) and the Cardiff Acne Disability Index (CADI) and to provide a cross validation of 2 scales. METHODS: This cross-sectional study was conducted among the pupils of the secondary railway-technical school in Belgrade, Serbia. 478 pupils (aged 15 - 18 years) completed 2 HRQoL questionnaires: CDLQI and CADI. We used t-test for differences between mean values of CDLQI and CADI and Spearman's rho coefficient for correlation between 2 questionnaires. RESULTS: Self-reported acne was present in 71.6% of pupils (64.3% boys and 35.7% girls). The overall mean CDLQI score (4.35 of max. 30) and the overall mean CADI score (3.57 of max. 15) were low, indicating a mild impairment of HRQoL among adolescants. There was good correlation between the 2 questionnaires (Spearman' rho = 0.66). CONCLUSION: The CADI and the CDLQI questionnaires represent simple and reliable instruments for the assesment of HRQoL among schoolchildren with acne. In this study, we identified 17% of boys and 18% of girls perceived their acne as a major problem. It is important to detect and treat such adolescents on time to reduce the psychosocial burden associated with acne.

Effectiveness of social skills training for reduction of self-perceived stigma in leprosy patients in rural India--a preliminary study.

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.

Pride and prejudice--identity and stigma in leprosy work.

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.

Social implications of leprosy in the Netherlands--stigma among ex-leprosy patients in a non-endemic setting.

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.