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Background: Although users' involvement in mental health research has repeatedly been acknowledged as having a positive influence on research quality, this rarely happens. Aims: To develop and validate a Questionnaire on Users' Opinions (QOU) about schizophrenia, in close collaboration with 279 persons affected by this disorder. Methods: A preliminary list of items concerning the opinions of users with schizophrenia regarding causes, treatments and psychosocial consequences of the disorder was developed by 38 users with schizophrenia and 40 professionals who attended a workshop. Psychometric properties of the QOU were tested on 241 users with schizophrenia, 149 of whom were randomly assigned to a test-retest study and 92 to a face-validity study. Content and construct validity were explored in the whole sample. Results: The final version of the QOU contains: (1) 24 items on the psychosocial consequences of schizophrenia, grouped into six subscales, whose Cronbach's alpha ranged between 0.55 and 0.74; (2) five multiple choice items on the Italian psychiatric law; (3) 12 open questions; and (4) four yes/no skipping items. Items' reliability, measured by Cohen's kappa coefficient, ranged between 0.55 and 0.92. Conclusion: This questionnaire may be useful to assess patients' beliefs about schizophrenia and to target psychosocial interventions for this mental disorder. Key words: opinions, participatory research, questionnaire, reliability, schizophrenia, users, validity

This study compares the social network of a sample of 709 relatives of patients with schizophrenia, 646 relatives of patients with physical diseases, and 714 lay respondents, recruited in 30 randomly selected Italian areas, stratified for geographic location and population density. Each respondent was asked to fill in the Social Network Questionnaire. The social network was less extended and supportive in relatives of patients with schizophrenia than in those of patients with physical diseases and in the general population. Multivariate analyses revealed that social contacts were similarly reduced in relatives of patients with schizophrenia and physical diseases, while social support was significantly lower in relatives of patients with schizophrenia than in the other two groups. Social resources were higher in young respondents and in those living in rural areas. These results highlight the need to provide the families of those with long-term diseases with interventions aimed at increasing their social resources. Keywords: Social network; Schizophrenia; Physical diseases; Relatives; General population

To link to full-text access for this article, visit this link: http://dx.doi.org/10.1016/j.socscimed.2005.08.003 Byline: Lorenza Magliano, Andrea Fiorillo, Claudio Malangone, Corrado De Rosa, Mario Maj Keywords: Social network; Schizophrenia; Physical diseases; Relatives; General population Abstract: This study compares the social network of a sample of 709 relatives of patients with schizophrenia, 646 relatives of patients with physical diseases, and 714 lay respondents, recruited in 30 randomly selected Italian areas, stratified for geographic location and population density. Each respondent was asked to fill in the Social Network Questionnaire. The social network was less extended and supportive in relatives of patients with schizophrenia than in those of patients with physical diseases and in the general population. Multivariate analyses revealed that social contacts were similarly reduced in relatives of patients with schizophrenia and physical diseases, while social support was significantly lower in relatives of patients with schizophrenia than in the other two groups. Social resources were higher in young respondents and in those living in rural areas. These results highlight the need to provide the families of those with long-term diseases with interventions aimed at increasing their social resources. Author Affiliation: Department of Psychiatry, University of Naples SUN, Largo Madonna delle Grazie, Naples, Italy

This study explored burden and social networks in families of patients with schizophrenia or a long-term physical disease. It was carried out in 169 specialised units (mental health department, and units for the treatment of chronic heart, brain, diabetes, kidney, lung diseases) recruited in 30 randomly selected geographic areas of Italy. The study sample consisted of 709 key relatives of patients with a DSM-IV diagnosis of schizophrenia and 646 key relatives of patients with physical diseases. Each relative was asked to fill in the Family Problems Questionnaire (FPQ) and the Social Network Questionnaire (SNQ). In all selected pathologies, the consequences of caregiving most frequently reported as always present in the past 2 months were constraints in social activities, negative effects on family life, and a feeling of loss. Objective burden was higher in brain diseases, and subjective burden was higher in schizophrenia and brain diseases than in the other groups. Social support and help in emergencies concerning the patient were dramatically lower among relatives of patients with schizophrenia than among those of patients with physical diseases. In the schizophrenia group, both objective and subjective burden were significantly higher among relatives who reported lower support from their social network and professionals. The results of this study highlight the need to provide the families of those with long-term diseases with supportive interventions, including: (a) the management of relatives' psychological reactions to patient's illness; (b) the provision of information on the nature, course and outcome of patient's disease; (c) training for the relatives in the management of the patient's symptoms; and (d) the reinforcement of relatives' social networks, especially in the case of schizophrenia. Keywords: Italy; Schizophrenia; Physical diseases; Family caregivers; Burden of illness; Social networks; Italy

To link to full-text access for this article, visit this link: http://dx.doi.org/10.1016/j.socscimed.2004.11.064 Byline: Lorenza Magliano, Andrea Fiorillo, Corrado De Rosa, Claudio Malangone, Mario Maj Abstract: This study explored burden and social networks in families of patients with schizophrenia or a long-term physical disease. It was carried out in 169 specialised units (mental health department, and units for the treatment of chronic heart, brain, diabetes, kidney, lung diseases) recruited in 30 randomly selected geographic areas of Italy. The study sample consisted of 709 key relatives of patients with a DSM-IV diagnosis of schizophrenia and 646 key relatives of patients with physical diseases. Each relative was asked to fill in the Family Problems Questionnaire (FPQ) and the Social Network Questionnaire (SNQ). In all selected pathologies, the consequences of caregiving most frequently reported as always present in the past 2 months were constraints in social activities, negative effects on family life, and a feeling of loss. Objective burden was higher in brain diseases, and subjective burden was higher in schizophrenia and brain diseases than in the other groups. Social support and help in emergencies concerning the patient were dramatically lower among relatives of patients with schizophrenia than among those of patients with physical diseases. In the schizophrenia group, both objective and subjective burden were significantly higher among relatives who reported lower support from their social network and professionals. The results of this study highlight the need to provide the families of those with long-term diseases with supportive interventions, including: (a) the management of relatives' psychological reactions to patient's illness; (b) the provision of information on the nature, course and outcome of patient's disease; (c) training for the relatives in the management of the patient's symptoms; and (d) the reinforcement of relatives' social networks, especially in the case of schizophrenia. Author Affiliation: Department of Psychiatry, University of Naples, Largo Madonna delle Grazie, I-80138 Naples, Italy

Background: What patients' relatives and health professionals think about causes, treatments and psychosocial consequences of schizophrenia can influence its detection and outcome. Aims: To compare the beliefs about schizophrenia in 190 nurses, 110 psychiatrists and 709 relatives of patients with this mental disorder, recruited in 30 randomly selected mental health centres. Methods: In each centre, the key-relatives of the first consecutive 25 subjects with schizophrenia, and the nurses and psychiatrists who had been working in the service for at least one year, were asked to complete the Questionnaire on the Opinions about Mental Illness (QO). Results: The factors most frequently mentioned by psychiatrists and nurses among the causes of schizophrenia were heredity, stress and family conflicts, while those most frequently mentioned by relatives were stress, traumas and love breakdown. Nurses had opinions: (a) similar to those expressed by psychiatrists concerning patients' ability to work equally as other people, and patients' punishability in case of illegal acts; (b) similar to those expressed by relatives about patients' unpredictability and political rights; (c) significantly different from the other two samples as concerns recognition of patients' affective rights. Conclusions: Family psychoeducational interventions and nurses' training should address not only clinical aspects but also disability and psychosocial consequences of schizophrenia. Key words: beliefs, mental health professionals, relatives, schizophrenia