A Multicenter Italian Study of Patients' Relatives' Beliefs About Schizophrenia

The study was conducted from June to December 1998 among 30 Italian mental health departments, randomly selected and stratified by geographic area (northern, central, and southern Italy) and population density (fewer than 25,000, from 25,000 to 100,000, and more than 100,000 inhabitants).

Each mental health department recruited 25 consecutive patients who met the criteria of age between 18 and 50 years, a DSM-IV diagnosis of schizophrenia, at least one psychotic episode in the previous three years, no hospitalization in the past three months, and habitation with at least one adult relative in one environment at least five days a week for at least nine months during the previous year. All patients provided informed consent in addition to permission to contact their relatives. Each patient's key relative—the relative who spent the most hours in contact with the patient during the previous year—was asked to participate. The study was conducted according to the ethical guidelines of the World Psychiatric Association's Madrid Declaration.

The sample consisted of 709 patients and 709 key relatives. About two-thirds of the patients (482, or 68 percent) were male. The mean±SD age of the patients was 37.8±9.8 years, 567 (80 percent) were single, and 127 (18 percent) were employed; the mean duration of illness was 15.3± 11.0 years. Nearly three-quarters of the key relatives (504, or 71 percent) were female. Their mean±SD age was 57.1±12.6 years, 482 (68 percent) were parents of a patient with schizophrenia, 72 (10 percent) were spouses, 99 (14 percent) were brothers or sisters, and 56 (8 percent) were other relatives; 198 (28 percent) were employed, their mean±SD number of years of education was 7.2±4, and the mean±SD number of years they had spent with the patient was 29.7±12.5.

Most patients (695, or 98 percent) had received pharmacotherapy, and a third (248, or 35 percent) had received rehabilitative interventions in the past two months. Only 56 relatives (8 percent) had received psychoeducational interventions in the past two months. Thirty-five patients and 12 relatives refused to participate. The patients and relatives who agreed to participate (98 percent participation rate) were not significantly different in any respect from those who did not.

Patients' clinical status and disability were assessed with the Brief Psychiatric Rating Scale (BPRS) (7) and the Assessment of Disability (AD) interview (8), respectively. The AD is a semistructured interview derived from the psychiatric Disability Assessment Schedule, which provides a global rating of functioning in the previous month. Both instruments were administered by trained researchers and had high interrater reliability (Cohen's kappa coefficient between .60 and 1 for the BPRS items and between .80 and 1 for the AD items).

Each relative was asked to complete the Family Opinions Questionnaire (FOQ) and the Family Problems Questionnaire (FPQ). The FOQ is a 28-item self-report questionnaire that explores relatives' beliefs about the causes of schizophrenia; the patient's political, social, and affective rights; the patient's ability to perform social and occupational roles; and the effectiveness of available treatments. Cronbach's alpha for the subscales ranged from .56 to .66. Test-retest reliability of the FOQ items ranged from .50 to 1 for 74 percent of the items (Cohen's kappa coefficient) (9).

The FPQ is a 34-item self-report questionnaire that explores the family's objective and subjective burden, social and professional support received by the family, and relatives' positive attitudes and criticism toward the patient. Cronbach's alpha for the subscales ranged from .24 to .88. Test-retest reliability ranged from .50 and 1 for 79 percent of the items (Cohen's kappa coefficient) (10).

Only 24 percent of the relatives (156 of 652) believed that both biological and psychosocial factors had been involved in the development of their loved ones' schizophrenia. Seventy percent of the relatives (457 of 652) maintained that the disorder was due exclusively to psychosocial factors, such as stress, psychological traumas, or the breakdown of a romantic relationship; 6 percent (39 of 652) thought that the disorder had been caused exclusively by biological factors. Patients' intentional behaviors, such as using drugs or keeping bad company, were mentioned as factors by 28 percent of the relatives (182 of 652).

Seventy-five percent of the relatives (455 of 607) indicated a belief that mental hospitals are more similar to prisons than to general hospitals and that patients who have schizophrenia should not be admitted to such institutions. On the other hand, 77 percent (538 of 699) complained that the burden of their loved one's situation rested solely on them.

Sixty-eight percent of the relatives (405 of 596) agreed that patients with schizophrenia should be allowed to vote, 29 percent (171 of 596) believed that they should have children, and 45 percent (268 of 589) thought that a woman who has recovered from schizophrenia should be able to work as a baby-sitter. Forty percent (228 of 571) expressed the belief that their loved one would not recover any further, and 56 percent (384 of 686) complained of their loved one's being kept at a distance by other people.

Analysis of variance showed that the patients' political rights were more frequently recognized by relatives who lived in northern Italy than by those living in central and southern Italy (F=6.1, df=2, 593, p<.002). The same was true for relatives' opinions about patients' capacity to work after recovery from schizophrenia (F=5.4, df=2, 592, p<.01). Relatives who believed that schizophrenia is due exclusively to biological causes were more pessimistic about the possibility that their loved ones would ever recover from their disorder than those who believed that schizophrenia is due to psychosocial factors or to a combination of factors (F=5.4, df=2, 523, p<.005). Relatives who expressed a belief that the patient is at least partly responsible for his or her condition perceived higher levels of objective (F=8.5, df=1, 648, p<.004) and subjective (F=11.0, df=1, 647, p<.001) burden. Regression analysis showed that spouses of younger patients and of patients with lower levels of disability were more likely to have expressed the belief that persons with schizophrenia should have children than spouses of older patients and of patients with higher levels of disability (F=18.3, df=5, 565, r²=.14, p<.001).

To our knowledge, this is the first study of patients' relatives' beliefs about schizophrenia in a country in which psychiatric practice has been community oriented for several years. The most significant finding is that relatives of patients with schizophrenia who are living in Italy have been remarkably influenced by media campaigns emphasizing the drawbacks of large mental hospitals and supporting the civil and political rights of persons who have mental disorders. In fact, the relatives surveyed seemed to believe that mental hospitals are not appropriate places in which to treat their loved ones. Moreover, most of the relatives agreed that people with schizophrenia should be allowed to vote.

However, the relatives in our study appeared to have a stricter attitude toward affective rights, such as the right to get married and have children, and tended to perceive their loved ones as being subject to social discrimination. These attitudes may be related to the difficulties in implementing rehabilitative interventions, especially in southern Italy, and the associated increases in family burden. This added burden, plus the poor availability of family psychosocial interventions, may have exacerbated relatives' pessimism about the affective, social, and employment opportunities of persons with schizophrenia. Patients' political rights and ability to work after recovery from schizophrenia were more frequently recognized by relatives in northern Italy, where the average educational level is higher and social and work opportunities are more commonly available.

Relatives who expressed the belief that patients with schizophrenia are responsible for their condition indicated higher levels of personal burden. It is likely that when relatives think that schizophrenia is caused by factors that are under the patient's control, they are less understanding and perceive illness-related problems to be more demanding.

Relatives' beliefs about the causes of schizophrenia were very different from those reported in European countries that have different sociocultural backgrounds and where mental health care is organized differently (5). Although no other European study has investigated relatives' beliefs about the psychosocial consequences of schizophrenia, significant differences between countries are likely to exist.

The results suggest that psychoeducational programs and sensitization campaigns should focus on the affective and social rights of patients with schizophrenia in addition to addressing the clinical aspects of psychiatric disorders. Moreover, programs and campaigns should be tailored for the social and cultural background of the targeted population.

This study was supported by grant 96/Q/T/38 from the National Mental Health Project of the National Institute of Health, Italy.

The authors are part of the Working Group of the Italian National Study on Families of Persons With Schizophrenia and are affiliated with the department of psychiatry of the University of Naples SUN. Send correspondence to Dr. Magliano at the Department of Psychiatry, University of Naples SUN, Largo Madonna delle Grazie, 80138 Italy (e-mail, [email protected]).