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.

Patients' opinions about knowing their risk for depression and what to do about it. The predictD-qualitative study.

BACKGROUND: The predictD study developed and validated a risk algorithm for predicting the onset of major depression in primary care. We aimed to explore the opinion of patients about knowing their risk for depression and the values and criteria upon which these opinions are based. METHODS: A maximum variation sample of patients was taken, stratified by city, age, gender, immigrant status, socio-economic status and lifetime depression. The study participants were 52 patients belonging to 13 urban health centres in seven different cities around Spain. Seven Focus Groups (FGs) were given held with primary care patients, one for each of the seven participating cities. RESULTS: The results showed that patients generally welcomed knowing their risk for depression. Furthermore, in light of available evidence several patients proposed potential changes in their lifestyles to prevent depression. Patients generally preferred to ask their General Practitioners (GPs) for advice, though mental health specialists were also mentioned. They suggested that GPs undertake interventions tailored to each patient, from a "patient-centred" approach, with certain communication skills, and giving advice to help patients cope with the knowledge that they are at risk of becoming depressed. CONCLUSIONS: Patients are pleased to be informed about their risk for depression. We detected certain beliefs, attitudes, values, expectations and behaviour among the patients that were potentially useful for future primary prevention programmes on depression.

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.

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.

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)