Family burden and social network in schizophrenia vs. physical diseases: preliminary results from an Italian national study

OBJECTIVE: To compare burden and social network in families of patients with schizophrenia or physical diseases. METHOD: A total of 709 relatives of patients with schizophrenia and 646 relatives of patients with physical diseases were recruited in 169 specialized units located in 30 randomly selected Italian geographical areas. RESULTS: In both groups, the consequences of caregiving most frequently reported as present were constraints in social activities, negative effects on family life and a feeling of loss. Objective burden was similar in the two groups, while subjective burden was higher in schizophrenia. Social support was lower among relatives of patients with schizophrenia than among those of the other group. CONCLUSION: These results highlight the need to provide families of those with long-term diseases with supportive interventions, aiming to: i) manage relatives' psychological reactions to patient's illness; ii) provide information on patient's disease; iii) reinforce relatives' social network, especially in the case of schizophrenia.     

The impact of professional and social network support on the burden of families of patients with schizophrenia in Italy

OBJECTIVE: (a) To explore burden related to caregiving and support received from professionals and social network in relatives of patients with schizophrenia in Northern, Central and Southern Italy; and (b) to test whether a higher level of family burden is associated with a lower level of professional and social network support. METHOD: Seven hundred and nine patients with schizophrenia and their key-relatives were consecutively recruited in 30 Italian mental health departments. Data were collected on: (a) patients' clinical status and levels of disability; (b) relatives' burden, social and professional support; (c) interventions received by patients and their families. RESULTS: Family burden was found lower in Northern Italy. However, after controlling for psychosocial interventions, differences in family burden among the three geographical areas disappeared. Family burden was associated with patients' levels of disability and manic/hostility symptoms, and with professional and social network support received by the family. CONCLUSION: Professional and social network support represent crucial resources to reduce family burden in schizophrenia.     

Predictors of relatives' attendance at a state hospital workshop on schizophrenia

A prospective research design was used to identify patient and family variables that would predict relatives' attendance at an educational workshop on schizophrenia at a state psychiatric hospital. Data were collected from patient charts and telephone interviews with relatives. Thirty-two percent of the 84 invited relatives attended the workshop. Significant predictors of attendance included relatives' proximity to the hospital, previous number of visits with the patient, knowledge about schizophrenia, and familiarity with the National Alliance for the Mentally Ill. The findings suggest that a substantial proportion of relatives of the seriously mentally ill desire information and help in coping with their ill family member. Relatives' participation might be further increased by conducting workshops at more convenient sites and encouraging attendance by those less knowledgeable about schizophrenia.     

Family burden and coping strategies in schizophrenia: 1-year follow-up data from the BIOMED I study

Background: To date, only few data are available on how family burden in schizophrenia changes over time. In addition, no study has explored how such factors as coping styles and social support influence burden over time. This paper presents the 1-year follow-up data from the BIOMED I study on family burden and coping strategies in schizophrenia. Methods: A sample of 159 relatives of patients with schizophrenia living in five European countries was followed up prospectively for 1 year with regard to burden and coping strategies, using validated questionnaires. Results: In the sample as a whole, the burden was stable. A reduction of family burden over time was found among relatives who adopted less emotion-focused coping strategies and received more practical support from their social network. In addition, family burden decreased in relation to the improvement of patient's social functioning. Conclusions: When relatives of patients with schizophrenia are able to improve their coping strategies, it is possible for burden to be reduced even after several years. This points to the necessity to provide families of chronic psychotic patients with psychoeducational interventions emphasising the adoption of an effective coping style. Accepted: 22 November 1999     

Burden of relatives and predictors of burden. Baseline results from the Munich 5–year–follow–up study on relatives of first hospitalized patients with schizophrenia or depression

In the present study, part of the Munich 5-year follow-up study on key relatives of first-hospitalized schizophrenic and depressive patients, baseline results with respect to relatives' burden and predictors of burden are presented. Basing on a transactional stress model the following hypothesis was tested: the impact of the patients' illness on their relatives' stress outcome is moderated by the psychosocial resources of the relatives. Stress outcome was measured in terms of objective and subjective burden, well-being, self-rated symptoms and global satisfaction with life. Potential moderating variables included age and gender, generalized stress response and illness-related coping strategies, beliefs of control,perceived social support,personality factors, expressed emotion and life stressors. A total of 83 relatives, whose ill family members had been hospitalized in the Department of Psychiatry of the Ludwig-Maximilians-University of Munich for the first time, participated in the study. Findings did not entirely support the hypothesis. On the one hand, relatives' stress outcome was independent of the objective stressors (severity of the illness, kind of symptoms, level of psychosocial functioning at admission). On the other hand, burden was significantly associated with several psychosocial resources and dispositions of the relatives. Multivariate linear regression analyses indicated that expressed emotion, emotion-focused coping strategies and generalized negative stress response are the most relevant predictors of burden. It is argued that a multidimensional approach in burden assessment is necessary and has relevant implications for improving family intervention strategies.     

Patient functioning and family burden in a controlled, real-world trial of family psychoeducation for schizophrenia

OBJECTIVE: This study explored the effectiveness of a psychoeducational family intervention for schizophrenia on patients' personal and social functioning as well as on relatives' burden and perceived support. METHODS: Thirty-four mental health professionals from 17 public mental health centers in Italy selected 71 families of consumers with schizophrenia. Forty-two families were randomly assigned to a group that received the intervention for six months, and 29 families were assigned to a waiting list for six months. At baseline and six months later, validated tools were used to assess patients' clinical status, personal and social functioning, and social network as well as relatives' burden, social resources, and perception of professional support. RESULTS: In the intervention group the number of patients with poor or very poor global personal and social functioning decreased significantly, from 17 (47 percent) at baseline to nine (25 percent) at follow-up. A significant improvement was found for the intervention group in patients' social relationships, interests in obtaining a job, maintenance of social interests, and management of social conflicts. Twenty-seven patients (74 percent) reported that their social relationships had improved during the six-month period. For both the intervention and control groups, family burden significantly improved. Relatives' social contacts and perception of professional support significantly increased only in the intervention group. CONCLUSIONS: The results suggest that a psychoeducational family intervention may have a significant impact on functional outcomes of schizophrenia when provided to patients and caregivers in real-world settings.     

Relatives of patients with severe psychotic illness: factors that influence appraisal of caregiving and psychological distress

Background Research shows considerable variability in the effect on relatives of patients' mental illness but the determinants of relatives' experience remain unclear. We investigated the influence of demographic, social and clinical characteristics on relatives' experience when conceptualised using a stress-appraisal-coping paradigm. Methods Our sample was drawn from relatives of patients recruited to the UK700 case management study (n = 154). Demographic, social and clinical data were collected from patients, and relatives completed the Experience of Caregiving Inventory and the General Health Questionnaire. We predicted that patients' symptomatology in particular would influence relatives' experience, and that relatives who appraised caregiving more negatively and less positively would experience greater psychological distress. Results Linear regression analyses revealed that relatives' appraisal was not predicted by patients' symptomatology. Instead, relatives appraised caregiving more negatively if the patient was unemployed or younger, and less positively if the patient had been ill for longer or had poorer social functioning. Little of the variance in appraisal was explained by these variables, however. Consistent with the stress-coping model, relatives' negative appraisal was a strong predictor of psychological distress and accounted for a substantial proportion of its variance. Positive appraisal did not predict psychological distress, however. None of the demographic, social or clinical characteristics tested had any significant effect on relatives' psychological distress once appraisal was adjusted for. There was an unexpected positive correlation between the two appraisal scales, with relatives who appraised caregiving more negatively also appraising it more positively. Conclusions Our results support a stress-coping model of caregiving but further research is required to determine more influential predictors of relatives' appraisal. Our findings indicate that interventions aimed at patients' social functioning and relatives' negative appraisal of caregiving may assist in reducing relatives' psychological distress. Accepted: 24 August 2001     

Does Expressed Emotion need to be understood within a more systemic framework?

BACKGROUND: This study examined the relationship between discrepancies in beliefs about schizophrenia and Expressed Emotion (EE) in family dyads. METHOD: Illness beliefs were assessed in patients with a diagnosis of schizophrenia and their relatives (N=49 dyads). The degree and the direction of discrepancy were calculated, and comparisons were made between dyads in which the relative was rated as high EE and dyads in which the relative was rated as low EE. RESULTS: There was greater discrepancy between illness models of schizophrenia in dyads involving a high-EE relative than in dyads involving a low-EE relative. This difference was not accounted for by the differences in either relatives' or patients' beliefs alone. CONCLUSION: Further research is needed to understand EE in the context of discrepancies in beliefs between patients and relatives rather than focussing on relatives' beliefs alone.     

The association between expressed emotion, illness severity and subjective burden of care in relatives of patients with schizophrenia. Findings from an Italian population

ABSTRACT: BACKGROUND: An appropriate understanding of the association between high-Expressed Emotion (EE) in family members of people with schizophrenia, patients' and relatives' correlates is needed to improve adaptation of psychoeducational interventions in diverse cultures. The aim of this study was to test the hypothesis that relatives designated as high EE would report higher subjective burden of care, and would be associated with objective variables that indicate greater illness severity i.e. number of previous hospitalizations and duration of illness. METHODS: We performed secondary analyses of baseline data from a randomized controlled trial conducted in Italy. RESULTS: High-EE relatives reported more subjective burden of care in disturbed behaviours and adverse effects areas, but did not perceive more deficits in social role performances. As regards illness severity characteristics, neither the number of previous hospital admissions nor the duration of illness was associated with high-EE. However, patients' previous psychosocial functioning, as measured by educational attainments, seems to protect the relative from high-EE status. CONCLUSION: There is a need for cross-cultural comparisons of the subjective experience of distress and burden among high EE carers as a target for intervention, aimed at reducing family stress as much as improving patient outcomes.     

Burden on the families of patients with schizophrenia: results of the BIOMED I study

The burden, the coping strategies and the social network of a sample of 236 relatives of patients with schizophrenia, living in five European countries, were explored by well-validated assessment instruments. In all centres, relatives experienced higher levels of burden when they had poor coping resources and reduced social support. Relatives in Mediterranean centres, who reported lower levels of social support, were more resigned, and more often used spiritual help as a coping strategy. These data indicate that family burden and coping strategies can be influenced by cultural factors, and suggest that family interventions should have also a social focus, aiming to increase the family social network and to reduce stigma. Accepted: 31 December 1997     

Ethnicity, expressed emotion, and schizophrenia patients' perceptions of their family members' criticism

Expressed emotion is a widely researched construct. However, less is known about patients' own perceptions of their relatives' expressed emotion. Using a sample of 42 patient/family member dyads with schizophrenia, we examined the concordance between the number of criticisms expressed by relatives during the Camberwell Family Interview and patients' perceptions of how critical they perceived their relative to be. As predicted, white and Latino family members who expressed more criticism during the Camberwell Family Interview were indeed perceived as more critical by patients. Among blacks, however, no significant association was found between relatives' expressed criticism and patients' perceptions of their relatives' criticism. Findings from this study suggest that cultural/ethnic values may influence how criticism from relatives is perceived and experienced by patients.     

Relatives of psychiatric inpatients--do physical violence and suicide attempts of patients influence family burden and participation in care?

A common concern of psychiatric patients' relatives is that patients might be a danger to themselves or others. The aim of this study was to investigate family burden and relatives' participation in care in relation to physical violence towards others and suicide attempts by psychiatric inpatients before admission. Information concerning violence and suicide attempts by the patients prior to admission was collected from the medical records of 155 acutely voluntarily and involuntarily admitted psychiatric inpatients. Relatives were interviewed a month after admission, using a semi-structured questionnaire. Violence towards other persons and suicide attempts were recorded in 16% and 17% of the cases, respectively. There were no differences between relatives of patients who had been violent and other relatives regarding burden and participation in care. Relatives of patients with suicide attempts more often stated they had been prevented from having own company, worried about suicide attempts by the patient, had mental health problems of their own, and had own need for care and support. It was concluded that violence of acutely admitted psychiatric patients, targeted at other people, was not associated with burden of family, but the results corroborate the need for psychiatric services to involve and support relatives of psychiatric patients with suicidal behaviour.     

Appraisal of caregiving, burden and psychological distress in relatives of psychiatric inpatients.

Appraisal of caregiving and its relationship to family burden and experienced mental health problems in the relatives were investigated as part of a multi-centre study of the quality of mental health services in Sweden performed in 1997. The sample was drawn from relatives of involuntarily and voluntarily admitted patients to acute psychiatric wards. The instrument used was a semi-structured questionnaire, interviewing relatives about the burden, experience of mental health problems and appraisal of the caregiving situation. The results showed a high proportion of relatives engaged in caregiving activities on a daily basis the month before the patient's admission to hospital and a high proportion of relatives appraising the caregiving activities negatively. The burden was more extensive if the relative and the patient were living together, had a longer duration of their relationship, if the relative was rendering caregiving on a daily basis and if the relative appraised caregiving negatively. The relatives' psychological distress was not related to their negative appraisal of caregiving, nor was patient characteristics, such as diagnosis and level of psychosocial functioning. The only factor found to influence the relatives' psychological distress was the duration of relationship to the patient. Interventions reducing psychological distress for relatives who have known the patients for more than 20 years, who live with the patient, who give care on a daily basis and who appraise their caregiving negatively are suggested.     

Impact of cognitive-psychoeducational interventions in bipolar patients and their relatives.

BACKGROUND: In recent years, several controlled studies could show that psychoeducational interventions have been effective for relapse prevention in bipolar disorders. We therefore established a cognitive-psychoeducational group intervention with 14 sessions providing information about the illness, early warning signs, cognitive and behavioural strategies for stress management and social rhythm. Additionally we offered a group intervention for the patients' relatives. The objective of this study was to describe the outcome associated with our psychoeducational intervention in bipolar patients and their relatives. METHODS: Sixty-two bipolar patients attended 14 sessions (à 90 min) of cognitive-psychoeducational group therapy. Patients' knowledge of bipolar disorder and their satisfaction with the treatment were assessed using self-developed questionnaires before and after the group intervention. Additionally, 49 relatives of bipolar patients received two psychoeducational workshops of 4 hours each. We assessed demographic variables, burden, high expressed emotion and depressive symptoms of the relatives before and after the two workshops and at 1-year follow-up. RESULTS: Patients significantly improved their knowledge of bipolar disorder. They also have benefited from the discussions and the exchange of useful coping strategies. Burden and high expressed emotions showed no significant reductions at post-assessment, however they were significantly reduced at 1-year follow-up. Relatives also felt significantly better informed about the illness. CONCLUSIONS: These findings show that psychoeducational interventions in bipolar patients and their relatives improve patients' and their relatives' knowledge of the illness and the burden of the disorder as well as high expressed emotions are reduced in relatives at 1-year follow-up.     

The impact of caregivers' characteristics, patients' conditions and regional differences on family burden in schizophrenia: a longitudinal analysis

OBJECTIVE: Impact of caregiver characteristics, patient variables, and regional differences on family burden. METHOD: Two hundred and eighteen schizophrenia patients and key-relatives of an urban and a rural area were examined five times over 30 months. Patients' psychopathology, service utilization; relatives' burden, coping abilities and contact duration with the patients were recorded. Effects of interpersonal differences and intrapersonal changes over time were analyzed with regression models. RESULTS: Interpersonal differences (patients' positive and negative symptoms, relatives' coping abilities, and patient contact) and intrapersonal changes (relatives' coping abilities, patients' negative symptoms and utilization of community care) predicted family burden. CONCLUSION: Family education programs should help caregivers to improve their coping strategies. Therapy solutions must address negative symptoms just as much as positive symptoms, as these especially impact caregivers. Intensified community-based care can reduce burden, but provision alone is not sufficient. Psychiatrists and caregivers should motivate patients to take advantage of such offers.     

Weisen Angehörige von Patienten mit unterschiedlichen psychischen Erkrankungen auch Unterschiede in ihrer Einstellung zu diesen Erkrankungen auf?

BACKGROUND: Studies on the attitudes of relatives of psychiatric patients have usually focused on views of causes and treatment options for schizophrenic disorders. Comparative surveys, especially those dealing with attitudes on social distance and restrictions, have to date been rather an exception. METHODS: In the present study, 161 relatives and other close reference persons of patients with schizophrenic, recurrent depressive, or bipolar affective disorder were interviewed with the German version of the Questionnaire on the Opinions of the Family between February and July 2003. RESULTS: Relatives of patients with schizophrenic disorder differ from the other two groups especially in attitudes displaying greater social distance toward mental disorders and less hope for social reintegration of these patients. Independently of the form of disorder, natural relatives exhibit the greatest social distance toward mental disorders. Differences in attitudes on the basis of patients' and relatives' socio-demographic and clinical characteristics are rather scarce. CONCLUSIONS: Attitude toward mental disorders is an important trait of relatives supporting mentally ill persons. Differences in the effects of disorder-specific attitudes on relatives' well-being and their perception of burden have to be investigated further to enable the development of supportive strategies suited to the various groups of psychiatric patient relatives.     

Efficacy of a psychoeducational intervention in improving relatives' knowledge about schizophrenia and reducing rehospitalisation.

We sought to establish if a brief psychoeducational intervention for relatives is effective in improving relatives' knowledge about schizophrenia and reducing rehospitalization. We evaluated 101 relatives of 55 patients with schizophrenia before and after an 8-week psychoeducational group using a self-report method. We also conducted a matched case-control study of the effects on rehospitalisation for 28 of these patients. We calculated the number of hospital days for each index case and control in the 1 and 2 years before and after the intervention. Relatives made significant gains in their knowledge about schizophrenia, particularly about medication. Patients whose relatives attended the group had significantly fewer days in hospital and days per admission compared to controls in the year after the programme but the effect waned in the second year after the intervention. Controls were almost four times more likely to be readmitted at 2 years than cases. Median time to readmission was significantly longer in cases compared to controls. We conclude that a psychoeducational group, which is valued by carers, is effective in increasing their knowledge about schizophrenia as well as reducing and forestalling the rehospitalization of their affected relatives. Such programmes deliver what carers frequently request in a cost-effective manner.     

The needs of high and low expressed emotion families: a normative approach

Summary Comparison of the needs and characteristics of relatives classified as high and low expressed emotion (EE) across a range of measures including social functioning and indices of stress and family burden revealed that high EE relatives reported higher levels of disturbed behaviour, subjective burden, and perceived themselves as coping less effectively. Individuals from high-EE households were more impaired in terms of social functioning, particularly in terms of independence and interpersonal functioning. No difference in overall knowledge about schizophrenia was observed between high and low EE relatives, although high EE relatives possessed more information about hospital procedures. Analysis of needs assessment data, based on a normative approach to need, revealed that two-thirds of high EE relatives, as against one-third of low EE relatives had high needs in at least one or more of the following five areas: knowledge about schizophrenia, subjective burden, personal stress, behavioural disturbance and perceived coping. No low EE relative had high needs on all five criteria. The implications of the results for the meaning and genesis of EE and for service provision are considered.     

Direct effects of short-term psychoeducational intervention for relatives of patients with schizophrenia in Japan

This study examined the direct effects of short-term psychoeducation on relatives of inpatients with schizophrenia, with the goal of introducing this type of support program into standard care. The subjects were 46 relatives of inpatients with schizophrenia who attended three or four sessions of psychoeducation. Levels of anxiety and subjective burden and distress were measured before and after sessions using self-administered rating scales. In addition, levels of expressed emotion were also measured. Results showed that both state and trait anxiety on the State-Trait Anxiety Inventory were significantly lower after psychoeducational intervention than before intervention. In addition, subjective burden and distress reported by the family significantly decreased on the subscales for family confusion resulting from a lack of knowledge of the illness and anxiety about the future, subjective burden and depression resulting from the patient's illness, and difficulties in the relatives' relationships with the patient. Comparison of high and low expressed emotion families showed that the intervention was almost equally effective for the two groups. However, its effectiveness with regard to the subjective burden and depression experienced by the families was significantly greater among high expressed emotion families. The present study confirmed that family psychoeducation during hospitalization, even for a short period, is effective for all families, whether high or low expressed emotion. Moreover, the results suggested that the intervention may have a greater effect on emotional factors in high expressed emotion families than in low expressed emotion families.     

Multivariate prediction of relatives' stress outcome one year after first hospitalization of schizophrenic and depressed patients

Objective The present study presents the 1–year follow–up findings of the Munich 5–year follow–up study on relatives of first hospitalized patients with schizophrenia or depression. The aim of the study was to determine which factors moderate the impact of the patient's illness on the stress experienced by his key relative in different dimensions. Method Of the relatives who had participated in the baseline assessment, 90% could be reassessed (n = 69) with respect to their objective and subjective burden, well–being, self–rated symptoms and subjective quality of life as well as different personal dispositions and resources. Results Data demonstrate a considerable level of burden in most of the relatives at 1–year follow–up. Compared to baseline, a significant reduction in objective and subjective burden as well as significant improvements in well–being, self–rated symptoms and subjective quality of life occured in two–thirds of the relatives, while well–being and self–rated symptoms remained worse when compared to norm values. Although stress reduction was significantly associated with patients' residual symptoms on the bivariate level, no main effects on relatives' stress outcome at 1–year follow–up could be observed under multivariate conditions. In multivariate linear regression models for each stress indicator, different combinations of predictors resulted, explaining up to 75% of the total variance of the stress indicators. The most relevant predictors were relatives'expressed emotion and neuroticism, their generalized negative stress response and life stressors, having significant direct and indirect effects on relatives' stress outcome. Stress reduction was mainly caused by an interaction of relatives' generalized positive stress response and patients' residual symptoms. Conclusion Findings support the transactional character of the stress process in caring for a patient with a severe mental disease. A multidimensional approach is necessary to identify the most important predictors of burden in order to improve family intervention strategies which aim to reduce burden.