RESUMEN
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.
Asunto(s)
Escalas de Valoración Psiquiátrica/normas , Trastornos Psicóticos/psicología , Psicología del Esquizofrénico , Percepción Social , Estigma Social , Adolescente , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Prejuicio , Reproducibilidad de los Resultados , Apoyo Social , Adulto JovenRESUMEN
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.
Asunto(s)
Actividades Cotidianas/psicología , Necesidades y Demandas de Servicios de Salud/estadística & datos numéricos , Calidad de Vida/psicología , Esquizofrenia , Encuestas y Cuestionarios/normas , Adolescente , Adulto , Análisis de Varianza , Argentina , Brasil , Chile , Comparación Transcultural , Empleo/estadística & datos numéricos , Femenino , Vivienda/estadística & datos numéricos , Humanos , Masculino , Persona de Mediana Edad , Psicometría , Reproducibilidad de los Resultados , España , Reino Unido , Venezuela , Adulto JovenRESUMEN
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.