The Maristán stigma scale: a standardized international measure of the stigma of schizophrenia and other psychoses.

BACKGROUND: People with schizophrenia face prejudice and discrimination from a number of sources including professionals and families. The degree of stigma perceived and experienced varies across cultures and communities. We aimed to develop a cross-cultural measure of the stigma perceived by people with schizophrenia. METHOD: Items for the scale were developed from qualitative group interviews with people with schizophrenia in six countries. The scale was then applied in face-to-face interviews with 164 participants, 103 of which were repeated after 30 days. Principal Axis Factoring and Promax rotation evaluated the structure of the scale; Horn's parallel combined with bootstrapping determined the number of factors; and intra-class correlation assessed test-retest reliability. RESULTS: The final scale has 31 items and four factors: informal social networks, socio-institutional, health professionals and self-stigma. Cronbach's alpha was 0.84 for the Factor 1; 0.81 for Factor 2; 0.74 for Factor 3, and 0.75 for Factor 4. Correlation matrix among factors revealed that most were in the moderate range [0.31-0.49], with the strongest occurring between perception of stigma in the informal network and self-stigma and there was also a weaker correlation between stigma from health professionals and self-stigma. Test-retest reliability was highest for informal networks [ICC 0.76 [0.67 -0.83]] and self-stigma [ICC 0.74 [0.64-0.81]]. There were no significant differences in the scoring due to sex or age. Service users in Argentina had the highest scores in almost all dimensions. CONCLUSIONS: The MARISTAN stigma scale is a reliable measure of the stigma of schizophrenia and related psychoses across several cultures. A confirmatory factor analysis is needed to assess the stability of its factor structure.

Standardization of the MARISTÁN scale to measure needs in people with schizophrenia and related psychoses.

OBJECTIVE: Existing measures of needs in severe mental illness have been developed mainly from professionals' viewpoints and are Eurocentric. Our aim was to standardize a measure of the needs of people with schizophrenia across several cultures and based on users' own viewpoints. METHOD: An instrument to measure needs, based on qualitative data on users', carers' and professionals' views, was tested in 164 people with schizophrenia or related psychoses in six countries. Participants underwent face-to-face interviews, one third of which were repeated 30 days later. Principal axis factoring and Promax rotation evaluated scale structure; Horn's parallel combined with bootstrapping determined the number of factors; and intra-class correlation assessed test-retest reliability. RESULTS: The instrument contained four factors: (1) health needs; (2) work and leisure needs; (3) existential needs; and (4) needs for support in daily living. Cronbach's α for internal consistency was 0.81, 0.81, 0.77 and 0.76 for factors 1-4 and 0.81 for the scale as a whole. Correlation between factors was of moderate range for the first three factors (0.41-0.50) and low for the fourth factor (0.14-0.29). Intra-class correlation coefficient for test-retest reliability was 0.74 (0.64-0.82) for the whole scale. Mean item score on needs for support in daily living was lower than for the other factors. CONCLUSIONS: The MARISTÁN Scale of Needs evaluates needs from the patient perspective and it is a valid instrument to measure the needs of people with severe mental illness across cultures.

La reforma psiquiátrica española en perspectiva: logros y pendientes a la hora de la crisis / The spanish psychiatric reform in perspective: achievements, pending issues, and the crisis

Para analizar la reforma psiquiátrica española en perspectiva esta conferencia abarca desde el viejo dilema de dónde atender a los perturbados (con respuestas asistenciales como las del Hospital de Ignoscents en el siglo XV), a detalles del complejo modelo asilar del siglo XIX y que en su evolución se convierte en el modelo de referencia internacional, a lo más contemporáneo como el sistema open door que combina el carácter asilar con el abierto para los enfermos menos graves. El artículo plantea cuestionamientos al modelo asilar, describe a la comunidad como alternativa al hospital psiquiátrico, detalla cómo se ha llevado a cabo la institucionalización de la reforma psiquiátrica en España y analiza los datos de población, territorio y recursos humanos en salud mental.

In order to analyze the Spanish psychiatric reform, this conference starts from the old dilemma of where to care for the disturbed, that began with Hospital de Ignoscents in the fifteenth century, to the asylum model of the nineteenth century that subsequently became the international reference model, to the most contemporary forms of care based on the open door system that combine institutionalization with ambulatory care for the less compromised patients. The article questions the asylum model and says that the community is an alternative to psychiatric hospitals. The article goes on to describe the process of institutionalization of the psychiatric reform in Spain and includes data con population, territory and human resources in mental health.

Factors associated with unmet needs in individuals with schizophrenia in Chile / Fatores associados com as necessidades não satisfeitas em indivíduos com esquizofrenia no Chile

OBJECTIVE: To evaluate the possible associations between different sociodemographic, clinical, and healthcare factors and the number of unmet needs among people being treated for schizophrenia. METHODS: The sample was made up of 141 subjects who were being treated at eight mental health service networks throughout Chile. Unmet need was assessed with the Camberwell Assessment of Need, which was specifically created for people with severe mental disorders. A multiple linear regression analysis was also applied. RESULTS: It was found a direct association with clinical variables: score in the Positive and Negative Syndrome Scale, global functioning at diagnosis, and change in global functioning at diagnosis from diagnosis to interview. However, sociodemographic (ethnicity, education level, and number of people who live with subject) and other clinical variables (age at diagnosis, and annual rate of relapse) were indirectly associated with unmet needs. CONCLUSIONS: Our results can be applied in order to coordinate and improve the effectiveness of mental health services in Chile.

OBJETIVO: Avaliar as possíveis associações entre diversos fatores sociodemográficos, clínicos e de cuidado à saúde e o número de necessidades não atendidas entre pessoas que estão sendo tratadas devido à esquizofrenia. MÉTODOS: A amostra foi composta por 141 indivíduos que estavam sendo tratados em oito redes de serviço de saúde mental por todo o Chile. A necessidade não atendida foi avaliada pela Camberwell Assessment of Need, que foi especificamente criada para pessoas com distúrbios mentais graves. Também foi aplicada uma análise de regressão linear múltipla. RESULTADOS: Encontrou-se associação direta com variáveis clínicas: escore na Positive and Negative Syndrome Scale, funcionamento global ao diagnóstico e mudança no funcionamento global ao diagnóstico desde o diagnóstico à entrevista. Entretanto, variáveis sociodemográficas (etnia, nível educacional e número de pessoas que moram com o indivíduo) e clínicas (idade no momento do diagnóstico e taxa anual de recidiva) foram indiretamente associadas com as necessidades não atendidas. CONCLUSÕES: Os presentes resultados podem ser aplicados para coordenar e aprimorar a eficácia dos serviços de saúde mental no Chile.

Development and validation of a risk model for prediction of hazardous alcohol consumption in general practice attendees: the predictAL study.

BACKGROUND: Little is known about the risk of progression to hazardous alcohol use in people currently drinking at safe limits. We aimed to develop a prediction model (predictAL) for the development of hazardous drinking in safe drinkers. METHODS: A prospective cohort study of adult general practice attendees in six European countries and Chile followed up over 6 months. We recruited 10,045 attendees between April 2003 to February 2005. 6193 European and 2462 Chilean attendees recorded AUDIT scores below 8 in men and 5 in women at recruitment and were used in modelling risk. 38 risk factors were measured to construct a risk model for the development of hazardous drinking using stepwise logistic regression. The model was corrected for over fitting and tested in an external population. The main outcome was hazardous drinking defined by an AUDIT score ≥8 in men and ≥5 in women. RESULTS: 69.0% of attendees were recruited, of whom 89.5% participated again after six months. The risk factors in the final predictAL model were sex, age, country, baseline AUDIT score, panic syndrome and lifetime alcohol problem. The predictAL model's average c-index across all six European countries was 0.839 (95% CI 0.805, 0.873). The Hedge's g effect size for the difference in log odds of predicted probability between safe drinkers in Europe who subsequently developed hazardous alcohol use and those who did not was 1.38 (95% CI 1.25, 1.51). External validation of the algorithm in Chilean safe drinkers resulted in a c-index of 0.781 (95% CI 0.717, 0.846) and Hedge's g of 0.68 (95% CI 0.57, 0.78). CONCLUSIONS: The predictAL risk model for development of hazardous consumption in safe drinkers compares favourably with risk algorithms for disorders in other medical settings and can be a useful first step in prevention of alcohol misuse.

[Mental health care: perceptions of people with schizophrenia and their carers]. / Cuidado en salud mental: percepción de personas con esquizofrenia y sus cuidadores.

The current study aims to discover the opinions of patients and their (informal and formal) carers concerning the mental health care of individuals with long term schizophrenic disorders within different contexts and cultures. It's a qualitative study with focus groups,in which 6 research centers (from Argentina, Brazil, Chile, Spain, England and Venezuela) participated. Eight focus groups were conducted in each center, totaling 303 individuals in 46 groups. The data were analyzed with the aid of the Qualitative Solutions and Research/Non-numerical Unstructured Data Indexing program (QSR NUD*IST 4.0). The perception regarding the quality of care is influenced by the professional-patient relationship and the availability of resources. Poor quality of care is also perceived as discrimination. People with schizophrenia in general consider themselves to be ostracized by professionals and services and lacking in more humanized care. In the contexts in which community care is less advanced, the complaints center on resources and services that do not meet demands. On the other hand, in more developed contexts criticism centers more on the attitude of the professionals and the professional patient relationship. Over and above the need for resources and services, people with schizophrenia require more humanized health care.

Cuidado en salud mental: percepción de personas con esquizofrenia y sus cuidadores / Mental health care: perceptions of people with schizophrenia and their carers

El presente trabajo pretende conocer la percepción de personas que sufren esquizofrenia y de sus cuidadores respecto a los cuidados ofrecidos por profesionales y servicios de salud en distintos contextos socioculturales. Se trata de un estudio cualitativo con grupos focales. Los participantes (303 individuos) provenían de servicios primarios y secundarios de salud de Argentina, Brasil, Chile, España, Inglaterra y Venezuela. Los datos fueron explorados a través del proceso de análisis de contenido, con el auxilio del programa Qualitative Solutions and Research/Non-numerical Unstructured Data Indexing (QSR NUD*IST 4.0). La percepción sobre la calidad del cuidado es influenciada por la relación profesional-paciente y por la disponibilidad de recursos. La precariedad de la atención también es entendida como discriminación. Personas con esquizofrenia en general se perciben desvalorizadas por profesionales y servicios y sienten falta de un cuidado más humanizado. En los contextos en que el cuidado comunitario es poco desarrollado, las quejas se centran en la falta de recursos y servicios. Mientras en los contextos más desarrollados las críticas están más relacionadas con la actitud de los profesionales y a la relación médico-paciente. Mas allá de la necesidad de recursos y servicios, personas con esquizofrenia requieren un cuidado más humanizado.

The current study aims to discover the opinions of patients and their (informal and formal) carers concerning the mental health care of individuals with long term schizophrenic disorders within different contexts and cultures. It's a qualitative study with focus groups,in which 6 research centers (from Argentina, Brazil, Chile, Spain, England and Venezuela) participated. Eight focus groups were conducted in each center, totaling 303 individuals in 46 groups. The data were analyzed with the aid of the Qualitative Solutions and Research/Non-numerical Unstructured Data Indexing program (QSR NUD*IST 4.0). The perception regarding the quality of care is influenced by the professional-patient relationship and the availability of resources. Poor quality of care is also perceived as discrimination. People with schizophrenia in general consider themselves to be ostracized by professionals and services and lacking in more humanized care. In the contexts in which community care is less advanced, the complaints center on resources and services that do not meet demands. On the other hand, in more developed contexts criticism centers more on the attitude of the professionals and the professionalpatient relationship. Over and above the need for resources and services, people with schizophrenia require more humanized health care.

Cuestiones existenciales en la esquizofrenia: percepción de portadores y cuidadores / Questões existenciais em esquizofrenia: percepção de portadores e cuidadores / Existential questions in schizophrenia: perception of patients and caregivers

OBJETIVO: Examinar los temas y cuestiones existenciales del cotidiano de personas con esquizofrenia y de sus cuidadores. MÉTODOS: Estudio cualitativo con grupos focales. Fueron incluidos 146 sujetos con esquizofrenia (55 por ciento hombres) y 80 cuidadores (75 por ciento mujeres) que provenían de servicios primarios y secundarios de salud de Argentina, Brasil, Chile, España, Inglaterra y Venezuela. Cada grupo tenía de 6 a 10 participantes. Los datos fueron explorados por el proceso de análisis de contenido. RESULTADOS: Fueron identificadas cuatro cuestiones existenciales omnipresentes en los discursos: la necesidad de realización como persona y de encontrar un sentido en la vida; la necesidad de ser respetado y no sufrir discriminación; el conflicto decurrente de la pérdida de autonomía; la importancia de comprender la enfermedad y de reconocerse como enfermo. Las cuestiones existenciales aparecieron fuertemente conectadas a necesidades objetivas, como la falta de ocupación y trabajo, que generalmente resultan en una vida sin propósito y sentido. CONCLUSIONES: Hace falta desarrollar un nuevo tipo de cuidado en salud, en que la consideración por la persona con esquizofrenia y la valoración de su subjetividad sean tan importantes cuanto el tratamiento biológico, así como crear estrategias de promoción de la salud que comprendan mecanismos de inclusión laboral y combato al estigma.

OBJETIVO: Examinar os temas e questões existenciais do cotidiano de pessoas com esquizofrenia e de seus cuidadores. MÉTODOS: Estudo qualitativo com grupos focais. Foram incluídos 146 sujeitos com esquizofrenia (55% homens) e 80 cuidadores (75% mulheres) que procediam predominantemente de serviços primários e secundários de saúde de Argentina, Brasil, Chile, Espanha, Inglaterra e Venezuela. Cada grupo tinha de seis a dez participantes. Os dados foram explorados em processo de análise de conteúdo.RESULTADOS: Foram identificadas quatro questões existenciais onipresentes nos discursos: a necessidade de realização pessoal e de se encontrar um sentido para a vida; a necessidade de ser respeitado, não sofrer discriminação e preconceito; o conflito decorrente da perda de autonomia; a importância de compreender a doença e se reconhecer como enfermo. As questões existenciais apareceram fortemente vinculadas a necessidades objetivas, como a falta de ocupação e trabalho, que geralmente resultam em uma vida sem finalidade e sentido. CONCLUSÕES: É necessário desenvolver um novo tipo de cuidado em saúde, em que a consideração pela pessoa com esquizofrenia e a valorização de sua subjetividade sejam tão importantes quanto o tratamento biológico, além de criar estratégias de promoção de saúde que compreendam mecanismos de inclusão laboral e combate ao estigma.

Existential questions in schizophrenia: perception of patients and caregivers.

OBJECTIVE: To examine existential questions in the daily life of people with schizophrenia and their caregivers. METHODS: Qualitative study with focus groups. 146 people with schizophrenia (55% men) and 80 caregivers (75% women) participated. They came predominantly from primary and secondary health services of Argentina, Brazil, Chile, Spain, England and Venezuela. Each group had between six and ten participants. The data was explored through a content analysis process. RESULTS: Four omnipresent existential themes were identified from the discussions: the need for personal development and to find meaning in life; the need to be respected and not suffer discrimination or stigma; the conflict resulting from the loss of autonomy; the importance of understanding the illness and recognizing it as an illness. The existential questions were closely associated with objective needs, such as the lack of occupational opportunities and employment, which generally result in a life without meaning. CONCLUSIONS: It is necessary to develop a new type of health care in which both the consideration for the person with schizophrenia and their subjectivity are as important as biological treatment. Health promotion strategies need to combat stigma and use mechanisms of occupational inclusion.

Atención comunitaria a personas con trastornos psicóticos

[Prólogo - Mirta Roses, Directora]. La reforma psiquiátrica ha sido y sigue siendo una prioridad en la agenda de salud pública de la Región de las Américas. Para apoyar su implantación y ejecución, durante los últimos 20 años la Organización Panamericana de la Salud (OPS) ha promovido innumerables acciones de cooperación técnica destinadas a reforzar las capacidades de los países, en particular los de América Latina y el Caribe, en el desarrollo de políticas y planes nacionales de salud mental. En seguimiento a la Declaración de Caracas, realizada en 1990, tanto la OPS como el Departamento de Salud Mental y Abuso de Sustancias de la Organización Mundial de la Salud (OMS), los gobiernos de varios países y expertos de diversas partes del mundo llevaron a cabo iniciativas que abrieron el camino a transformaciones importantes en las políticas y en los servicios de muchas naciones de la Región. Sin embargo, como se demostró en la evaluación realizada en 2001 en el ámbito de las iniciativas de la OMS en salud mental, a pesar del progreso realizado, aún quedaba mucho por hacer y había que buscar nuevas estrategias, capaces de responder a los desafíos de la reforma psiquiátrica...Espero que esta publicación pueda ser un instrumento útil para todos los que trabajan en pro de la mejoría de la atención a las personas con enfermedades mentales severas en América Latina y el Caribe: responsables políticos, profesionales, usuarios, familiares e investigadores.