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.

Standardised measures of needs, stigma and informal care in schizophrenia using a bottom-up, cross-cultural approach.

Background There is a lack of instruments to measure the needs, stigma and informal care of people with schizophrenia that take account of sociocultural variation and patients' and formal and informal carers' opinions and experiences. Aims To develop questionnaires to measure stigma, needs and informal (non-professional) care for people with schizophrenia. Method We undertook the study in seven countries and in English, Spanish and Portuguese. We first held focus group discussions with patients, formal carers (professionals) and informal carers (family and friends) in Spain, the UK, Argentina, Brazil, Chile and Venezuela to elicit the main dimensions of needs, stigma and informal care. We then held nominal group discussions about these dimensions with patients, family members and professionals in Spain, Portugal and the UK, to develop the instruments. Results Three hundred and three people participated in 46 focus groups and results were discussed in three nominal groups, each involving eight participants. Three instruments were developed in this iterative process: needs for care (46 items), stigma (38 items) and informal care (20 items). Conclusions These instruments are based on service users' and carers' views and experiences and have cross-cultural validity. They will have application in assessment of outcomes for people with schizophrenia and their families.

Estudio multicéntrico sobre estigma, necesidades y cuidados de personas con trastornos mentales de larga evolución / Multi-centered study on the stigma, needs, and care of persons with long-evolving mental disorder

Introducción: El estudio multicéntrico de la red MARISTAN tiene como objetivo estudiar el estigma, las necesidades y los cuidados no formales relacionados con las personas que padecen de trastornos psicóticos de larga evolución. Método: El estudio, en su fase inicial, utiliza la técnica de grupos focales con el objeto de obtener una percepción de los tres aspectos señalados desde tres perspectivas complementarias: de los usuarios, de los familiares que les atienden y de los profesionales que les brindan los cuidados formales. Discusión: Aún se encuentra en fase de análisis de resultados, sin embargo revela su importancia desde el punto de vista transcultural y de la sistematización de las diferentes fases de la investigación cualitativa (AU)