Review Schizophrenia: Hypnosis Self-hypnosis Hypnotherapy Hypnotism Pastlife Regression Agra India

Mind Power Lab

 

Family Burden in Schizophrenia:
Review of Literature

Jackson, Smith and McGorry (1990) explored the relationship between level of expressed emotion (EE) and level of family burden in 20 families of individuals with psychotic disorder. Results indicated that a relationship between EE and family burden did exist, but it appeared to be strongly influenced by demographic and illness-related variables. The usefulness of the 5-min speech sample method of assessing EE was limited by the aversion of some family members to being videotaped and by denial of patient symptoms by some relatives.

Raj, Kulhara, and Avasthi (1991) studied sixty patients diagnosed as 'positive' or 'negative' schizophrenics to evaluate social burden experienced by a key relative. The study had a prospective design and the patients were followed for a period of six months. At the time of initial assessments, in the 'positive schizophrenia' group, no significant correlation between ratings on psychopathology and social burden was observed, although at the end of the period of follow-up significant reductions in ratings on psychopathology and social burden as well as significant correlation between severity of psychopathology and burden of care were noted. In the 'negative schizophrenia' group, the severity of psychopathology and social burden were significantly correlated, but at the end of six months no significant change either in severity of psychopathology or social burden emerged.

Gopinath and Chaturvedi (1992) interviewed the relatives of 62 schizophrenics systematically regarding the behavior of the patients that was perceived to be distressful. This was done using the Scale for Assessment of Family Distress. It was noted that behaviors related to activity and self-care were perceived to be most distressful, and not aggressive or psychotic behavior. Distress was more often reported by younger relatives and those with more education.

Martyns-Yellowe (1992) investigated burden of schizophrenia on rural and urban Nigerian families using a standardized questionnaire. Rural families experienced more burden; however, the difference was significant only in respect of financial burden. Rural families of schizophrenics were shown to be more prone to minor psychiatric morbidity than urban families.

Bulger, Wandersman and Goldman (1993) investigated the caregiving experiences of 60 parents of adults with schizophrenia for the presence of gratification; the role of the interpersonal caregiver-child relationship; and the effects of burden, gratification, conflict, and intimacy. Results indicated that relationships, as measured by intimacy and conflict, were more highly associated with burden and gratification than were severity of schizophrenic symptoms or degree of caregiving involvement.

Winefield  and Harvey (1993) obtained information from the members of a self-help group for the relatives of schizophrenia sufferers through a mail survey, using standardized measures of psychological distress and burden, and severity of the sufferer's illness. Caregiver psychological distress was high compared with test norms, and the level of behavioral disturbance in the sufferer was found to contribute to caregiver distress after controlling for the caregiver's age, sex, and social supports. An unexpected finding was that those caring for female sufferers reported greater distress than those caring for males.

Cook, Lefley, Pickett and Cohler  (1994) examined family burden reported by parents of offspring with severe mental illness was to determine whether burden increases with age. Older parents were troubled by cognitive dimensions of burden, while younger parents were distressed by their offspring's behavior, suggesting that interventions should vary according to parents' age as well as developmental stage of their child's illness.

Salleh (1994) assessed the prevalence of mental disorders among 210 primary carers of Malay schizophrenic patients, explored the burden and hardship experienced by them. This was a two-stage psychiatric screening procedure. All the cases suspected from initial screening with WHO Self-Reporting Questionnaires (SRQ-20) were called for clinical interview. Patients' behavioral problems and the burden of relatives were assessed by the Social Behavior Schedule and the Interview Schedule respectively. It was found that about 23% of the carers developed neurotic disorders resulting from the stress; nearly half of them had neurotic depression. Despite their burden, they do not complaint about it. Neurotic carers compared with non-neurotic carers had significantly more subjective burden and distress related to the product of active psychosis. The carers were generally able to tolerate the negative symptoms of schizophrenia. The number of problem behaviors and previous admissions were significantly correlated with the severity of burden.

Scazufca and Kuipers (1996) examined to what extent expressed emotion (EE) levels in relatives are related to relatives' burden of care and their perceptions of patients' deficits in social role performance. Fifty patients recently admitted to hospital with DSM-III-R diagnoses of schizophrenia or schizophreniform disorder were assessed for positive and negative symptoms. Fifty relatives who were living or were in close contact with these patients were interviewed for the assessment of EE and burden or care, and to provide information about patients' social role performance and social and behavior problems. High-EE relatives had considerably higher mean scores for burden of care then low-EE relatives and perceived more deficits in patients' social functioning than low-EE relatives. The employment status of relatives was the only socio-demographic characteristic of relatives and patients associated with EE levels, those who were working being less likely to be high EE. Patients' psychopathology was not associated with EE levels and burden of care. This study showed that EE and the burden of care are related. EE and burden both measure aspects of the relationship between relatives and patients. These findings suggest that EE and burden of care are more dependent on relatives' appraisal of the patient condition than on patients' actual deficits.

Mueser, Webb, Pfeiffer, Gladis and Levinson (1996) compared the burden that specific problem behaviors of patients with schizophrenia or bipolar disorder placed on relatives and evaluated the accuracy of mental health professionals' judgment of the burden. A questionnaire was developed to assess the burden of 20 common problem behaviors associated with manic, positive, and negative symptoms. The questionnaire was given to 48 relatives of patients with schizophrenia or bipolar disorder. In addition, 39 mental health professionals completed separate questionnaires indicating the amount of burden they believed relatives experienced due to these behaviors. Relatives of patients with bipolar disorder rated manic symptoms as more burdensome than did relatives of patients with schizophrenia, but relatives of patients in the two groups did not differ in their ratings of burden associated with positive or negative symptoms. Professionals' perceptions of the burden associated with manic symptoms were relatively accurate, but they tended to underestimate the burden of positive and negative symptoms experienced by relative of patients with bipolar disorder. Psychiatric diagnosis may be of limited value in understanding the burden relatives experience due to specific psychiatric symptoms.

Stueve, Vine, and Struening (1997) investigated differences in perceived burden among black, Hispanic, and white groups of caregivers of adults with serious mental illness. Controlling for sociodemographic characteristics and caregiving-related stressors, black caregivers tended to report less burden than whites, a result not explained by protective mechanisms (social support, religious involvement, illness attributions). No statistically significant differences were found in perceived burden between Hispanic and white caregivers.

Bury, Zaborowski, Konieczynska, Jarema, Cikowska, Kunicka, Bartoszewicz and Muraszkiewicz (1998) evaluated caregiver burden among family members of 90 schizophrenic patients from hospital psychiatric ward, day hospital or from community psychiatry unit. Psychopathology was evaluated with the use of PANSS while family burden with the use of Tessler's scale which allowed to differentiate between objective and subjective burden regarding assistance to the subject and patient's supervision. Schizophrenic symptoms were more severe in hospitalized patients than among patients from day hospital or patients treated in the community. Family burden, both subjective and objective was more severe among family members of hospitalized patients. There was no difference in the severity of family burden among family members of patients from day-hospital or from community psychiatry unit. The severity of positive and general schizophrenic symptoms (PANSS) correlated positively with the lack of patient's acceptance by a family member as well as with the global subjective family burden and with the necessity of taking control over patient. There was a positive correlation between the severity of schizophrenic negative symptoms and subjective family burden (dimension: assistance to the patient) and the sum of objective family burden.

Scazufca and Kuipers (1998) studied whether changes in expressed emotion (EE) levels over time are associated with changes in relatives' burden of care and their perception of patients' social functioning. Fifty patients with a diagnosis of schizophrenia and 50 relatives were included in the study soon after patients' admission to hospital. Thirty-six relatives and 31 patients were re-assessed 9 months after patients' discharge. Both assessments included patients' symptomatology and relatives' EE levels, burden of care, and perception of patients' social functioning. Twenty-three relatives (64%) had the same EE level in both assessments, nine (25%) had changed from high to low EE, and four (11%) from low to high EE. Improvement in burden and perception of patients' social role performance were significantly more accentuated among relatives who changed from high to low EE than among relatives who had a stable EE level. Variables that best predicted changes in EE levels were changes in burden scores and number of hours of contact between patients and relatives at follow-up. Change in EE is associated with change in circumstances and burden.

Lanzara, Cosentino, Lo Maglio, Lora, Nicolo and Rossini (1999) evaluated psychopathological symptoms, disabilities and family burden in schizophrenic patients and analyzed predictors of family burden and relatives' satisfaction. Descriptive study of 203 patients with an ICD 10--F2 diagnosis (schizophrenia and related disorders) in contact with the Desio Department of Mental Health on 31st December 1994. The patients were evaluated in three areas: disability (by ADC-DAS), psychiatric symptoms (by 24 items BPRS) and family burden (by Family Problems questionnaire). The outpatient, hospital and residential care contacts of the patients were collected for six months by their service information system. For each area (DAS, BPRS and FP) a principal component analysis and a rotation of the significant components were performed. Eleven factors, derived from three scales, have been retained as explanatory variables. Finally, a multiple regression analysis was performed to assess the influence of explanatory variables on the set of response variables regarding family burden and relatives' satisfaction. One third of patients suffer of moderate-severe positive symptoms, while negative symptoms were less frequent. Manic symptoms were rare while depressive were more frequent. Disability, related to work and sexual problems, was frequent; social withdrawn, under activity, lack of participation in household duties and lack of self care were less frequent. Family burden was severe in one third of relatives, mainly in social relationships. Disability was the main predictor of family burden; manic and positive symptoms, time spent by the carer with the patient and carer's social support were less important. Satisfaction with services was predicted by family burden.

Jenkins and Schumacher (1999) studied the relationship between family burden and sociocultural context. A comparative study of Euro-Americans and Latinos ascertained whether dimensions of family response are (a) non-specific to diagnostic groups; and/or (b) variable across cultural settings. Regardless of diagnosis or ethnicity, patient misery was found most burdensome and distressing. However, considerable difference in shades of meaning and nuance across groups appears in relation to what is classed similarly as 'misery'. Only gender was significantly associated with social performance (males reported to have greater deficits). A complex cultural ecological effect was observed among the Latino-schizophrenia group. Findings suggested similarities and differences in levels of family burden in relation to socio-cultural factors across cultural and diagnostic groups. The specificity of results by objective and subjective measures, types of burden, gender, ethnicity, diagnosis, and living situation confirm the importance of context and heterogeneity in understanding family burden and distress.

Dyck, Short and Vitaliano (1999) tested predictive models of schizophrenia caregiver burden and infectious illness episodes for caregivers who had regular contact with their mentally ill family members.  A nurse interviewer, blind to the patient's symptoms, caregiver burden, and psychosocial status, administered the Health Review to 70 caregivers. A second family interviewer, blind to caregiver health status and patient symptoms, assessed caregiver resources (eg, active coping and social support), vulnerabilities (eg, anger expression and passive coping) and burden. Concurrently, independent patient raters, blind to caregiver health and psychosocial status, assessed caregiver stressors. The Brief Psychiatric Rating Scale and the Modified Scale for the Assessment of Negative Symptoms were used to assess the severity of positive (eg, hallucinations and delusions) and negative (eg, anhedonia and asociality) symptoms, respectively. Predictive models, including measures of stressors, resources, and vulnerability factors for caregiver burden and for presence of infectious illness, were each highly significant, accounting for 40% and 29% of the variance, respectively. However, the specific measures that predicted burden and infectious illness differed. Greater burden was predicted by more severe patient negative symptoms (stressor), greater anger control and blame self-coping (vulnerability), and decreased tangible social support (resource). Presence of infectious illness episodes was predicted by more severe patient positive symptoms (stressor) and less satisfaction with social support while controlling for the frequency of reporting on the Health Review. When scores from the Brief Psychiatric Rating Scale (stressors) were categorized into quartiles, it was found that the frequency of infectious illness in the highest quartile was four times that in the lowest quartile. Other results indicated that even though burden was not associated with infectious illness, it was associated with "continuing health problems," perceived stress, and depression. These data indicated that although schizophrenia caregiver burden and infectious illness are predicted by measures of patient stressors, vulnerabilities, and resources, the specific measures predicting these outcomes differ.

Srivastava and Sharma (2000) measured felt burden by caregivers of schizophrenic patients and its correlation with age, sex, marital status, literacy, employment status, duration of illness, domicile and previous hospitalization of patients. A sample of 34 schizophrenic patients diagnosed as per ICD-10 criteria was taken. Burden Assessment Schedule was used. Very low positive correlation was observed with identified variables. t-test for population correlation was not significant upto 5% probability level.

Kumar, Mohanty, singh, and Sharma (2001) investigated the experience of burden among spouses of chronic schizophrenic patients. 20 male spouses and 20 female spouses of chronic schizophrenics served as sample. Burden Assessment Schedule was administered. Analysis of the data for the dimension of literacy, family type, and place of residence revealed significantly more burden in literate female spouses and the spouses of male patients of in nuclear set up. No gender differences emerged in rural and urban bases spouses.

Martens and Addington (2001) determined whether a measure of caregiving would be a stronger predictor of the psychological well-being of families who have a member with schizophrenia than a measure of burden. Forty-one family members of 30 individuals with schizophrenia were recruited. A measure of burden, a measure of the experience of caregiving, and the duration of the illness were used to determine the best predictor of psychological wellbeing. Regression analyses indicated that the strongest predictor of psychological well-being was the negative scale of the Experience of Caregiving Inventory (ECI). There was also a significant relationship between poor psychological well-being and short duration of illness. The findings of the study indicated that family members are significantly distressed as a result of having a family member with schizophrenia.

Ohaeri (2001) assessed the severity of indices of burden among relatives of 75 schizophrenics and 20 major affective disorder cases, to identify the factors associated with burden, to assess the relationship between caregiver burden and patients' perception of social support, and to compare these with equivalent data for cancer patients' relatives. Caregivers were assessed, using a burden questionnaire and Goldberg's General Health Questionnaire (GHQ-12). Patients were assessed for perception of social support from the extended family. Clinical severity and burden indices were similar for the psychiatric illness groups. However, relatives of patients with psychotic symptoms, unco-operative behavior, marital instability and unemployment had significantly higher GHQ scores; while patients from such families perceived a wider social support network. Financial burden was greater than effect on family routines. Disruption of family routines, GHQ scores and (inversely) size of family network patient expected support from, predicted global rating of burden. Although clinical severity and disruption of family routines for cancer patients were higher; relatives of psychiatric patients had higher GHQ scores, more family disharmony and greater social stigma. Disturbed behavior is a greater determinant of severity of burden than psychiatric diagnosis.

Magliano, Malangone, Guarneri, Marasco, Fiorillo and Maj (2001) aimed to describe: a) the interventions received by patients with schizophrenia attending Italian mental health services (MHS); b) the relatives' burden and social network and the professional support received by the families. The study has been carried out in 30 MHS, randomly selected and stratified by geographic areas and population density. 25 patients with a DSM-IV diagnosis of schizophrenia and 25 relatives were recruited in each MHS. Family burden was evaluated in relation to: a) geographic area; b) interventions received by the patients; c) social and professional support received by the families. Main outcome measures were: a) patients: Brief Psychiatric Rating Scale (BPRS) and Disability Assessment Interview (AD); b) key-relatives: Family Problems Questionnaire (QPF) and Social Network Questionnaire (QRS); c) interventions received by the patients and their families: Scheda di Rilevazione degli Interventi--Pattern of Care Schedule (SRI). Data on 709 patients and their key-relatives were collected. In the two months preceding the data collection, 35% of patients attended rehabilitative programmes; 80% of the families were in regular contact with the MHS and 8% received family psychoeducational interventions. Family burden was higher in Southern than in Central and Northern Italy. This difference disappeared when rehabilitative interventions and family support were provided. This study highlighted that the situation of the families of patients with schizophrenia is more burdensome in Southern Italy and is greatly influenced by the type of interventions provided by the MHS.

Boye, Bentsen, Ulstein, Notland, Lersbryggen, Lingjaerde and Malt (2001) explored the relationship between relatives' distress and patients' symptoms and behaviors. Fifty relatives in close contact with 36 patients with schizophrenia DSM-III-R filled in the General Health Questionnaire (GHQ) and the Perceived Family Burden Scale (PFBS) at the patient's hospital admission, 4.5 and 9 months post-discharge. The patients were assessed by means of the Positive and Negative Syndrome Scale (PANSS). The PFBS anxiety-depression cluster was at all three assessments positively correlated with relative's distress (GHQ), not with PANSS anxiety and depression measurements. In multiple regression analysis PFBS, but not PANSS, was related to relatives' distress. Relatives' distress was related to their reports of problematic patient behaviors, especially anxiety-depressive behavior, not to symptoms as measured by clinical interviews.

Kataria, Bhargava, and Vohra (2002) estimated the correlation between the disability of schizophrenia and burden on the family. 50 schizophrenic patients diagnosed as per ICD-10 along with their key relatives were studied. For the assessment of disability and family burden, Disability Assessment Schedule (WHO, 1998) and the Interview Schedule (Pai and Kapur, 1991) were used. Results of the study revealed that most of the features of disability and family burden have positive correlation.

Jungbauer and Angermeyer (2002) highlighted different aspects of the subjective burden experienced by parents and spouses of patients suffering from schizophrenia based on the analysis of 42 in-depth interviews. The onset of a schizophrenic disorder and acute episodes during the later course of the disease lead to considerable emotional distress for the patients' caregivers. In everyday life with the patient, parents and spouses experience a comparatively less dramatic chronic burden, which nevertheless can severely affect their living situation and well-being. Caregivers often feel disappointed and dissatisfied with the information and cooperation offered by psychiatric institutions. Parents and spouses perceive the caregiver burden differently, although there are some apparent similarities.

Mory, Jungbauer, Bischkopf, and Angermeyer (2002) compared financial burden of spouses, whose relative suffers from schizophrenia, depression or anxiety disorder. 151 spouses filled in the questionnaire about illness related expenses and financial loss. Additionally they estimate their subjective burden according to these experienced costs. Direct cash expenditures on behalf of the patients' illness were reported by 66 % spouses. In the sampling the amount of spent money did not differ statistically, however spouses of patients with anxiety disorder emphasized experiencing financial strain and described more often subjective economic disadvantages. Although most spouses of patients with psychiatric disorders experience illness related financial disadvantages, these costs were usually not considered as serious problem or as burdensome. Based on a subjective hierarchy of burdens financial problems can be regarded as less important for spouses of patients with mental illness.

Mory, Jungbauer and Angermeyer (2002) compared financial burden of parents and spouses, whose relative is suffering from schizophrenia. 51 parents and 52 spouses filled in the questionnaire about illness related expenses and financial loss; additionally they were asked to estimate the experienced burden on a subjective dimension. Direct cash expenditures on behalf of the patients' illness were reported by 63 % spouses and 69 % parents. Above all, the patient's reduced ability to work was seen as main cause for long-term loss of family income. In general economic disadvantages were not considered as burdensome. Although most parents and spouses of schizophrenic patients experience illness related financial disadvantages, it seems that these costs were usually not defined as serious problem.

Jungbauer, Mory, Angermeyer (2002) explored more accurately, how caregivers of schizophrenic patients perceive the financial burdens of the disease. 42 In-depth-interviews with parents and spouses of schizophrenic patients were analyzed using a qualitative-interpretative technique. When talking about their living situation, caregivers tended to keep away from the topic of financial charges; often they played down objective financial disadvantages or didn't assess them as burdensome. Considerable financial burdens were reported by parents of young patients still living in the parents' household and by spouses in families with very low income. Financial burdens are usually superimposed by other problems of the caregivers, such as dealing with acute episodes and sorrow about the future.

McDonell, Short, Berry and Dyck (2003) investigated predictors of family burden and tested to what degree multiple family group treatment (MFGT), relative to a standard care condition, was associated with reduced family burden. Participants were 90 outpatients with a diagnosis of schizophrenia or other psychotic disorders, and their caregivers who were enrolled in a 2 year psychoeducation intervention. The best set of predictors of burden, identified by stepwise linear regression, was young patient age, awareness of patient's suicidal ideation, and family resources. These variables accounted for 32% of the total variance in burden. Findings suggest that caregiver's awareness of patient's suicidal ideation, not patient's report of suicidal ideation; and that patient age, not duration of the illness, were significant independent predictors of burden. When compared to a standard-care condition over 2 years, MFGT did not reduce family caregiver burden.

Lauber, Eichenberger, Luginbuhl, Keller and Rossler (2003) assessed the relationship between caregiver burden and behavioral disturbances of the affected, e.g. threats, nuisances, but also substance use and aggression. Two weeks before the last hospitalization of the affected are considered as being the most burdensome period for relatives. Sixty-four relatives of schizophrenic patients were assessed by the semi-structured "Interview for Measuring the Burden on the Family". Subscales and total scales of burden were calculated. Predictors were identified by regression analyses. The most important predictor of burden is burden in the relationship between caregiver and the affected representing the changes in the relationship occurring in acute illness. Threats, nuisances, time spent with the affected, and burden due to restricted social life and leisure activities were additional predictors, but not aggression or substance abuse. Eighty-five percent of the cases could be assigned correctly. To better encounter burden, relatives should learn to cope with disturbing behavior of and altered relationship to the affected, but also with their own needs. Finally, relatives must be included in the decision whether or not an affected person should be hospitalized.

Tsang, Tam, Chan and Cheung (2003) explored the relationship between stigma, accessibility of mental health facilities and family burden through individual interviews of patients' relatives in order to understand the burden on mentally ill patients' relatives from their perspectives. Ten interviewees from two out-patient psychiatric clinics were recruited and interviewed. Each interviewee had at least one family member receiving out-patient psychiatric services. Altogether 11 mentally ill patients were involved. Data analyses showed that much of the burden was related to stigma and to lack of mental health and rehabilitation services. Consequences included social isolation of the families, difficulties experienced by the mentally ill patients when trying to obtain competitive employment and financial difficulties. Subjective burden resulting from social stigma included frustration, anxiety, low self-esteem and helplessness.

Lane, McKenna, Ryan and Fleming (2003) explored the profile, role and needs of family caregivers as a means of understanding their experience of caring. The study also set out to identify coping strategies employed by caregivers and explore positive aspects of the caring relationship in relation to quality of life, information needs, day care and respite care, transport and emotional support. A multimethod approach used interviews, focus groups and postal questionnaires. In the main study a pretested questionnaire, comprising closed and open questions was used with a stratified, systematically randomized sample of caregivers in urban and rural home care settings, of which 52% of respondents to the questionnaire volunteered to partake in in-depth interviews. The data yielded a rich and meaningful picture of the caregiving experience, profiling the complex nature of this diverse and multifaceted role. Findings showed that three main categories emanated from the data: the caring role-context and attitudes, the impact of caring and the need to support the carers' role.

Jungbauer, Wittmund, Dietrich  and Angermeyer  (2003) investigated subjective burden in parents of patients with schizophrenia during a 12-month period. Using a narrative interview technique, parents were questioned regarding the subject of illness-related burden; follow-up interviews were conducted after 6 and 12 months, respectively. Forty-seven interview sets were examined with the aim of determining different types of burden development. The analysis yielded the following six developmental types: (1). constantly high level of burden; (2). increased burden; (3). reduced burden; (4). shifting burden; (5). preeminence of other burdens; and (6). constantly low level of burden. In general, changes in the parents' burden level are closely interconnected with the illness curve of the patients, with 40% of the study participants experiencing a constantly high level of burden during the course of the study. The results suggested that parents of continuously and severely affected patients are overloaded with their long-term caring tasks.

Trivedi, Dalal, Kalra and Mishra (2003) compared burden of care between the key relatives of patients suffering with schizophrenia, chronic depression or obsessive compulsive disorder (OCD). For this study, key relatives of consecutive patients with schizophrenia (n=30), chronic depression (n=34), and OCD (n=50) were evaluated with 40 items Burden Assessment Schedule (BAS). In comparison with chronic depression group, caregivers in both schizophrenia and OCD group had significantly higher mean scores for the subgroups of the caregivers routine and other relations and as well as total adjusted scores. No socio-demographic or clinical variable was found to affect burden in any study group except in relatives of schizophrenics where the patient and siblings experienced more burden in comparison to the spouses. Similarly, relatives in the age group of 16-35 years and 46-65 years had more burden as compared to relatives in age group of 36-45 years. These results have considerable implications for dealing with the families of mentally ill persons as part of overall management of psychiatric disorders.

Berglund, Vahlne and Edman (2003) focused on the effect of psycho-educative family therapy on the self-assessed burden in families in which one member has suffered from relapse of schizophrenia or a schizoaffective syndrome. The impact on the family's self-assessed attitude towards continuing to take care of the patient was also evaluated. Burden and attitude were assessed continuously during a period that contained no further relapse episodes. Included were 31 families in which one family member suffered from schizophrenia or a schizoaffective syndrome. Of these, 14 families underwent a psycho-educative intervention programme called BFT (Behavioral Family Therapy). The remaining 17 families, i.e. the contrast group, received conventional family support. The intervention was initiated within 24 hour after the patient/family member was admitted to a psychiatric ward due to relapse of the psychotic disorder. The intervention continued until the patient was discharged from hospital. Falloon's Distress Scale and Attitude Scale were used in the families' self-assessments of burden and attitude towards continuing to take care of the patient, respectively. The self-assessments were performed on three occasions: 1) on the day of admission to the ward, or the day after; 2) 4-5 weeks after admission; and 3) on the day of discharge, or the day after. Medication doses were registered upon admission and at the time of discharge. Finally, the rates of re-occurring relapses within 1 year after discharge from hospital were determined, i.e. 1 year after the completion of the family treatment programme. The BFT families had access to the therapist for questions after the programme had been completed, when needed. The patients and families in the contrast group had access to physicians and therapists in the outpatient care. The self-assessed family burden was significantly lower for the BFT families at the time of discharge, compared to the contrast group, and the self-assessed attitude towards continuing to take care of the patient was significantly more positive for the BFT families at the time of discharge, compared to the contrast families. One patient in the BFT group relapsed within 1 year, whereas 13 patients relapsed in the contrast group. The dosages of neuroleptics were significantly lower on discharge than on admission for the patients in the BFT group. The results suggested that BFT, when provided to schizophrenic patients and their families during a hospitalization period caused by a psychotic relapse, reduces the feeling of burden in these families. Likewise, the families' attitude towards continuing to take care of the patients was influenced in a positive way.

Stalberg, Ekerwald and Hultman (2004) developed a detailed analysis of the psychological aspects of having a sibling with schizophrenia. They did a qualitative study with audiotaped semistructured interviews of 16 siblings. The reliability of the inductive categorization of data was high. A unifying theme appeared to be an emotional sibling bond characterized by feelings of love, sorrow, anger, envy, guilt, and shame. The major categories linked to coping with the situation were avoidance, isolation, normalization, caregiving, and grieving. A third major theme consisted of a fear of possible schizophrenia heredity. The siblings described concerns about the impact of a family history of psychiatric illness, a fear of becoming mentally ill, and reflections about "bad genes." Their findings support earlier findings of coping patterns but complement them by providing a model that includes awareness of genetic vulnerability as an important part of siblings' subjective burden.

Lowyck, De Hert, Peeters, Wampers, Gilis and Peuskens (2004) studied the factors contributing to family burden. One hundred and fifty family members (parents/partners) of schizophrenic patients participated in the study. The results of were (1) that family members experience burden both on a practical and an emotional level, (2) a highly significant correlation between the amount of symptomatic behavior of the patient and family burden, (3) that parents had taken on more tasks, had contributed more financially and had experienced a tenser atmosphere at home than partners did and (4) that family members of patients who have been treated for less than 1 year worry more about the other members of their family than family members of patients who have been receiving treatment for more than 1 year. Family members of schizophrenic patients experience burden on a practical, financial and emotional level and the extent of the burden is closely linked to the amount of symptomatic behavior of the patient.

Jungbauer, Wittmund, Dietrich and Angermeyer (2004) reported that spouses not only face illness-specific burdens but also burdens resulting from their partnership and family roles. From a biographical point of view, schizophrenia is often evaluated by the spouse as a decisive point in life that seriously affects the couple's relationship, the family, and the spouse's own life. The chronic burdens of everyday living can profoundly reduce the quality of life and the subject's satisfaction with the partnership. Though partnerships with schizophrenia patients are at risk of breakdown and separation in many respects, they are often maintained for years. Despite the illness-related burdens, many spouses take positive stock of living together. Stable partnerships seem to be achievable when the partner's impairment is perceived as moderate or moderately severe, and when the frequency at which psychotic episodes occur is assessed as still being tolerable. Spouses who suffer from mental illness or impairment themselves often experience the partnership as an appropriate and satisfactory way of life. In these cases, the mutual understanding rooted in the subject's own experiences with the illness is important.

Madianos, Economou, Dafni, Koukia, Palli and Rogakou (2004) examined the dimensions of burden perceived by key-relatives of patients suffering from schizophrenia spectrum disorder by the development of an instrument, the Family Burden Scale (FBS) and the underlying predictors. One hundred and seventy one primary caregivers, living with 158 patients suffering from chronic psychotic illness and maintained on community basis in Athens area, were interviewed by the use of FBS supplemented by the Family Atmosphere Scale and GHQ. Construction procedure and factor analysis of FBS produced a scale of 23 items in four factors, three of them measuring objective and the fourth one, subjective burden. The scale was also proved to be reliable and valid. Forty-five percent of primary caregivers reported high levels of burden. Psychological impairment (high GHQ scores) was related with high levels of burden and negative family atmosphere. Previous admissions and duration of illness were also found to predict burden. The results suggest that FBS differentiates objective from subjective burden. Psychological well being of carers is affected by the dimensions of perceived burden.

Rudge and Morse (2004) reported on a qualitative, critical study into the lives of relatives and partners of people living with enduring effects of schizophrenia. A review of the literature showed that caregivers and relatives of sufferers were seldom asked about their experiences, instead they were subject to blame or criticism regarding their parental or caregiving practices. Caregivers of people with schizophrenia were interviewed in order to reveal their experience of caring for their kin after a medication change to atypical neuroleptics. The interview analysis was compared with mental health professional literature, using a Foucauldian approach to reveal the operation of language and power in the positioning of caregivers. This analysis was then compared to the talk of the caregivers. Similarities and differences in their ways of talking about caring were identified. Caregivers spoke of protracted periods of time before the establishment of a definite diagnosis, ambivalence about medication and 'never giving up'. The paper concluded that life for caregivers is constituted as doubly problematic, experiencing stigma personally and vicariously through their kin.

Kumar, Singh and Mohanty (2005) administered Burden Assessment Schedule on 70 spouses of chronic schizophrenic patients in order to delineate gender differences in perceived burden of care. The results indicated that female spouses reported significantly greater burden than male spouses. Moreover, female spouses perceived higher burden in external support, caregivers routine, patients behavior and caregivers strategy areas.

Srivastava (2005) measured the perception of burden by caregivers of patients with schizophrenia and its correlation with 9 factors on the Burden Assessment Schedule (BAS) related to spouse, physical and mental health, external support, caregivers routine, support of patient, responsibility taking, other relatives, patients behavior and caregivers strategy. A low positive correlation was found between urban domicile and support of the patient; of domicile Agra and effect on other relations, and domicile Agra and effect on the caregivers routine. There was a low positive correlation between age less than 30 years and the physical and mental health of the caregivers, and with taking responsibility. The t-test for population correlation was significant up to 5% probability level. For correlation between urban domicile and support of the patient; between domicile Agra and effect on other relations; between domicile Agra and the effect on the caregivers routine; between age less than 30 years and physical and mental health of the caregivers; and between age less than 30 years and taking responsibility.

Wittmund, Nause and Angermeyer (2005) hypothesized that the burden of caregivers indicate aspects of burden which do not seem to be associated with the patients' disorder. As part of a study on the burden of caregiving to mentally ill family members in-depth interviews as well as diary writing over a 12 weeks period were carried out with 6 spouses of patients suffering from schizophrenia or depression. Differences in the burden of caregiving do not seem to be related to the type of the patients' diagnosis. Aspects of partnership dominated the interviews and diary writing of the spouses. In all cases substantial parts of experienced burden are related to the spouses' efforts to share mastering of the illness with the patient. The hypothesis of specific aspects regarding the type of the patients' disorder related to spouses caregiver burden can not be supported by the results of this study.

Grover, Avasthi, Chakrabarti, Bhansali and Kulhara (2005) assessed the cost of care of Indian out-patients with schizophrenia. Cost of illness in 50 out-patients with schizophrenia was assessed over a 6-month period together with structured assessments of psychopathology and disability, and compared with 50 out-patients with diabetes mellitus. Total annual costs of care of schizophrenia were 274 US dollars; these were not significantly different from diabetes mellitus. Indirect costs (63%) were higher than direct costs. Drug costs were high. The main brunt of financial burden was borne by the family. Total treatment costs in schizophrenia were significantly higher in those who were unemployed, those who visited the hospital more often, and were more severely ill and disabled. Schizophrenia is an expensive illness to treat even in developing countries. Costs of care are similar to those of chronic physical illness, such as diabetes mellitus. Costs are higher in severely ill and disabled patients.

Magliano, Fiorillo, De Rosa, Malangone, Maj and the National Mental Health Project Working Group. (2005) explored burden and social networks in families of patients with schizophrenia or a long-term physical disease. It was carried out in 169 specialized 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.

Wittmund, Nause and Angermeyer  (2005) explored the relationship between burden and the type of disorder. As part of a study on the burden of caregiving to mentally ill family member’s in-depth interviews as well as diary writing over a 12 weeks period were carried out with 6 spouses of patients suffering from schizophrenia or depression. Differences in the burden of caregiving do not seem to be related to the type of the patients' diagnosis. Aspects of partnership dominated the interviews and diary writing of the spouses. In all cases substantial parts of experienced burden are related to the spouses' efforts to share mastering of the illness with the patient. The hypothesis of specific aspects regarding the type of the patients' disorder related to spouses caregiver burden can not be supported by the results of this study.

Gutierrez-Maldonado, Caqueo-Urizar and Kavanagh (2005) examined family burden and its correlates in a regional area of a medium income country in South America. Sixty-five relatives of patients with schizophrenia who were attending a public mental health out-patient service in the province of Arica, Chile, were assessed on Spanish versions of the Zarit Caregiver Burden Scale and SF-36 Health Survey (SF-36). Average levels of burden were very high, particularly for mothers, carers with less education, carers of younger patients and carers of patients with more hospitalizations in the previous 3 years. Kinship and number of recent hospitalizations retained unique predictive variance in a multiple regression. Burden was the strongest predictor of SF-36 subscales, and the prediction from burden remained significant after entry of other potential predictors. In common with families in developed countries, family members of schizophrenia patients in regional Chile reported high levels of burden and related functional and health impact. The study highlighted the support needs of carers in contexts with high rates of poverty and limited health and community resources.

Foldemo, Gullberg, Ek and Bogren (2005) compared the quality of life of parents of outpatients with schizophrenia with a randomly selected reference group and the relation between quality of life and burden on the parents. The sample comprised all parents (n=38) of outpatients with schizophrenia at an outpatient clinic in 2001, where the patients had contact at least once a week with both parents and staff. The parents were compared with a reference group (n=698). The self-rating scale Quality of Life Index (QLI) was used to assess quality of life in both groups. In the case of the parents, semistructured interviews were supplemented by the data collection to assess the degree of burden with the Burden Assessment Scale (BAS). The outpatients were also interviewed to assess their global function with the Global Assessment of Functioning scale (GAF) and the Clinical Global Impression scale (CGI). The parents were significantly less satisfied with their overall quality of life (p<0.05). There was a correlation between lower overall quality of life and higher perceived burden r=0.58 (p<0.01). There was also a correlation between lower values on the family subscale and social subscale within the QLI and higher subjective burden r=0.54 (p<0.01) and r=0.52 (p<0.01), respectively. These results indicate that caregiving has an influence on the family situation and on the quality of life of parents.

Angermeyer, Kilian, Wilms, and Wittmund (2006) investigated the quality of life of spouses of people with schizophrenia, depression or anxiety disorders. Spouses of patients suffering from schizophrenia (n = 45), depression (n = 49) and anxiety disorders (n = 39) were consecutively recruited from outpatient services in the city of Leipzig. Quality of life was assessed by means of the WHOQOL-BREF, a self-administered questionnaire developed by the World Health Organization. Compared with the general population, the quality of life of the spouses of mentally ill people was lower in the domains 'psychological well-being' and 'social relationships'. There was a significant association between the patient's functional level and the spouse's quality of life.

Caqueo-Urizar and Gutierrez-Maldonado (2006) examined family burden and its correlates in a medium income country in South America. Forty-one relatives of patients with schizophrenia who were attending a public mental health outpatient service in the province of Arica, Chile, were assessed on Spanish versions of the Zarit Caregiver Burden Scale. All caregivers show a very high degree of burden, especially mothers, older, with low educational level, without an employment and who are taking care of younger patients. As developing country, Chile has a few national social welfare and community rehabilitation programs for relatives of psychiatric patients, especially in this part of the country. This significantly influences the high level of burden experienced by these caregivers.

Park, Yoon, Lee, Cho, Lee, Eun, Park, Kim, Kim, Shin (2006) estimated the burden of disease especially caused by psychiatric disorders in Korea by using DALY, a composite indicator that was recently developed by the Global Burden of Disease study group. First, 11 of the major psychiatric disorders in Korea were selected based on the ICD-10. Second, the burden of disease due to premature death was estimated by using YLLs (years of life lost due to premature death). Third, for the calculation of the YLD (years lived with disability), the following parameters were estimated in the formula: the incidence rate, the prevalence rate and the disability weight of each psychiatric disorder. Last, they estimated the DALY of the psychiatric disorders by adding the YLLs and YLDs. The burden of psychiatric disorder per 100,000 people was attributed mainly to unipolar major depression (1,278 person-years), schizophrenia (638 person-years) and alcohol use disorder (287 person-years). For males, schizophrenia (596 person-years) and alcohol use disorder (491 person-years) caused the highest burden. For females, unipolar major depression (1,749 person-years) and schizophrenia (680 person-years) cause the highest burden. As analyzed by gender and age group, alcohol use disorder causes a higher burden than schizophrenia in men aged 40 years and older. For females, unipolar major depression causes the highest burden in all age groups. They found that each of the psychiatric disorders that cause the highest burden is different according to gender and age group.

Magliano, Fiorillo, Rosa, Maj; National Mental Health Project Working Group. (2006) compared burden and social network in families of patients with schizophrenia or physical diseases. 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. 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. 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.

Cleary, Hunt, Walter and Freeman (2006) designed their study to (1) assess the needs of patients recently admitted to hospital and ascertain the level of carer involvement while in hospital; (2) compare the degree of agreement between patients' and carers' perceptions of need and caregiver burden; and (3) determine the relationship between levels of need and carer burden prior to hospitalization. Over a 2-month period, consecutive patients (n = 200) were interviewed using the Camberwell Assessment of Need Short Appraisal Schedule and a modified version of the Involvement Evaluation Questionnaire to assess basic needs and patient perceptions of caregiver burden, respectively. Of the 200 patients interviewed, 68% (n = 135) identified a carer. Patients with schizophrenia had most met needs, those with affective disorders had most unmet needs and patients with other diagnoses recorded the lowest number of needs overall. The level of agreement between patient and carer perceptions of need was low, possibly because of confusion about the definition of need or different views about the support required to fulfill a need. Patients underestimated the consequences of caregiving, especially the impact of strained atmosphere, global burden, worrying about their future and encouragement to undertake an activity, indicating that carers were more burdened than patients perceived them to be.

Roick, Heider, Toumi, and Angermeyer (2006) investigated the impact of caregiver characteristics, patient variables, and regional differences on family burden. 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. 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.

Kumar, Singh and Mohanty (2006) explored to what extent psychosocial dysfunction in chronic schizophrenic patients contribute to the burden in their spouses. A sample of 30 male spouses of chronic schizophrenic patients was drawn from Institute of Mental Health and Hospital, Agra. Dysfunction Analysis Questionnaire and Burden Assessment Schedule were used to gather the relevant data. Product Moment Correlations were computed in DAQ and BAS scores. The results indicated significant positive correlations.

Magliano, Fiorillo, Malangone, et al. (2006) explored the effectiveness of a psychoeducational family intervention for schizophrenia on patients' clinical status and disability and relatives' burden and perceived support. The study has been carried out in 17 mental health centres. In each of them, 2 professionals were trained in a psychoeducational intervention and applied it for six months with families of users with schizophrenia. At baseline and six months later, patients' clinical status and disability, and relatives' burden, social network and professional support were assessed by validated tools. Of the seventy-one recruited families, 48 (68%) completed the intervention. At six months, a significant improvement was found in patients' clinical status and social functioning, as well as in relatives' burden and social and professional support. In particular, the percentage of patients with poor or very poor global social functioning dropped from 50% to 27% at six months. Forty percent of patients and 45% of relatives reported a significant improvement in their social contacts over the intervention period. The results of this study confirm the hypothesis that psychoeducational family interventions may have a significant effect on social outcome and family burden in schizophrenia when provided in routine conditions.

Perlick, Rosenheck, Kaczynski, Swartz, Cañive and Lieberman (2006) studied the components and correlates of caregiver burden in schizophrenia. The family caregivers of 623 (43 percent) of 1,460 patients with schizophrenia enrolled in the Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) were interviewed about resources they provided and experiences with patient behavior over the previous month. Patients were independently evaluated on symptoms, quality of life, neurocognition, medication side effects, and service use. Factor analysis reduced the caregiver data into four orthogonal factors assessing perceptions of patient problem behavior, patient impairment in activities of daily living, patient helpfulness, and resource demands and disruptions in the caregiver's personal routine. Hierarchical regression analyses demonstrated differential correlates of burden for each factor, explaining 34 percent of variance each for problem behavior and resource demands and disruption, 21 percent for impairment in activities of daily living, and 38 percent for patient helpfulness. Demographic characteristics and patient symptoms explained the greatest proportion of variance, whereas quality of life and service use explained modest variance and patient neurocognition and medication side effects were not significantly associated with burden.

Chrzastowski (2006) explored relationships between burden of care in parents of patients with schizophrenia or personality disorders and family interactions. Two main types of family interactions were distinguished according to Stierlin's theory: binding and expelling. Whereas binding leads to an increase in mutual dependency, expelling leads to a rise of mutual independence. Families were divided into three groups according to the ICD-10 diagnosis of the index offspring (18-35 years old): (1) schizophrenia (N=33), (2) personality disorder (N=35), (3) control group (N=35). There were no significant differences in the mean age of adult children and mean age of parents, occupational patterns of parents, number of children in families and length of marriage between three groups. In families with schizophrenic young adults, the levels of burden were elevated. However there was no statistical significance between the mean scores of parental burden in the families of schizophrenic patients and young adults with diagnosis of personality disorders. Parental burden was positively correlated with parents' expelling in families with young adults with schizophrenia or personality disorders. Father's burden was positively correlated with mother's expelling in all groups of families. This study suggests that the degree of parental burden may have an impact on family interactions.

Kumar and Mohanty (2007) investigated the effects of socio-demographic variables on spousal burden of schizophrenic patients. 70 spouses of chronic schizophrenic patients were drawn from OPD of Institute of Mental Health and Hospital, Agra. Burden Assessment Schedule was individually administered on each spouse. The results indicated significant effects of gender and family type on spousal burden.

Gutierrez-Maldonado and Caqueo-Urizar. (2007) explored the effectiveness of a psycho-educational family intervention program for reducing burden in caregivers of patients with schizophrenia in a developing country. Forty-five caregivers participated, 22 in a psycho-educational family intervention group and 23 in a control group. The family program was held once a week for 5 months. In the control group the caregivers received standard intervention, comprising periodical meetings with the staff to monitor the effects of the medication. Burden was measured before and after the intervention: relatives in the psycho-educational group were evaluated at inclusion and at the end of the program; controls were evaluated at inclusion and 5 months later. Burden decreased significantly in the psycho-educational group; mean scores on the Zarit Caregiver Burden Scale fell from 85.06 pre-intervention to 52.44 post-intervention, while scores fell only slightly in the control group, from 87.65 to 87.22. Treatment was especially effective in mothers and caregivers with lower educational levels. This intervention program for reducing caregiver burden in developing Latin American countries was effective.

Magana, Ramirez Garcia, Hernandez and Cortez (2007) examined the relation between caregivers' mental health and perceived burden and stigma and characteristics of the patient and caregiver. Interviews were conducted in the language of preference (Spanish or English) in Wisconsin, California, and Texas with 85 Latinos caring for an adult with schizophrenia. Measures included the Center for Epidemiologic Studies-Depression Scale, the Zarit Burden Scale, and the Greenley Stigma Scale. General population studies of Mexican Americans have found that between 12% and 18% meet the cutoff for being at risk of depression; however, 40% of the sample met this criterion. Younger caregiver age, lower levels of caregivers' education, and higher levels of the patients' mental illness symptoms were predictive of higher levels of caregivers' depressive symptoms. Caregivers' perceived burden mediated the relation between patients' psychiatric symptoms and caregivers' depression. Caregivers' perceived stigma was significantly related to caregivers' depressive symptoms, even when the analyses statistically adjusted for psychiatric symptoms and demographic variables. The high rates of depressive symptoms among Latino families caring for a relative with schizophrenia suggest that interventions should include attention to the mental health and recovery of family caregivers in addition to the patient's recovery. Younger Latino caregivers and those with lower levels of education are particularly at risk of depression.

Family Burden and Emotional States:

Provencher (1996) provided descriptive information about the negative consequences on the family (e.g. physical problems, restrictions in social life, tense relationships in the family) reported by the primary caregivers of persons with schizophrenia. Two types of objective burden were studied: general and attributable objective burden. The former refers to the general consequences on the family while the latter corresponds to those consequences specifically attributed to the presence of mental illness. Seventy primary caregivers completed a self-report instrument. The general negative consequences identified most frequently were tense relationships in the household, and the physical and emotional problems of the primary caregiver. The most common negative consequences directly related to the ill relative were the primary caregiver's emotional problems, the disturbance in the primary caregiver's performance of work, and the disruption in the lives of other adults in the household.

Sveinbjarnardottir and Dierckx de Casterle (1997) conducted a qualitative study in Iceland to describe the experiences of family members of the seriously mentally ill. Eighteen family members were interviewed. From organizing the interview data into categories nine theme clusters emerged: emotionally painful and disturbing feelings; fears about the safety of the patient as well as of other family members; unpredictability of the episodic characteristics of mental illness; prejudice or unfairness toward patient and family; acceptance of the illness; cognitive, emotional, and behavioral coping strategies; hope as an element to come to terms with the mental illness; emotional support; and the need for informational and instrumental support. These nine themes could be categorized into three main groups: emotional impact, adapting to the illness, and support needs.

Wittmund, Wilms, Mory, and Angermeyer  (2002) conducted a structured psychiatric interview (DIA-X-M-CIDI) with spouses of patients suffering from depression, anxiety disorders or schizophrenia (n=151). Covarying with the partner's gender and the severity of the patient's illness a significantly increased prevalence of depressive disorders could be found. Psychiatric patients' partners are at a high risk of developing a depressive disorder.

Jungbauer, Mory, and Angermeyer (2002) investigated to what extent caregivers of schizophrenia patients suffer from psychiatric and psychosomatic symptoms themselves; furthermore, whether there are differences between parents and spouses. 51 parents and 52 spouses of people with schizophrenia were interviewed regarding psychiatric and psychosomatic troubles using standardized questionnaires and diagnostic methods. A considerably increased prevalence of depressive disorders was found compared to the level in the general population. As well as mothers and wives, caregivers of patients with severe impairments of psycho-social functioning were particularly affected. The severity of the patient's disease and the caregiver's mental problems are significant predictors of psychosomatic complaints in parents and spouses. In addition, caregivers visit physicians more frequently, in particular family doctors, psychiatrists and psychotherapists.

Brady and McCain  (2004) reviewed the studies related to the family responses and emotional environment of families who have a member with schizophrenia. The lifetime emotional, social, and financial consequences experienced by individuals with schizophrenia have significant effects on their families. Family responses to having a family member with schizophrenia include: care burden, fear and embarrassment about illness signs and symptoms, uncertainty about course of the disease, lack of social support, and stigma. Study findings about families in which parents are hostile, critical, or overly involved are equivocal about whether this negative environment contributes to patient relapse.

Blanchard, Sayers, Collins and Bellack (2004) examined the relationship between symptomatology and the affect expressed between individuals with schizophrenia and their family members. It was hypothesized that, because of their impact on patient social behavior and potential burden on relatives, greater negative symptoms would be associated with less emotional expression in patients but would be related to the greater expression of negative emotions in their relatives within a problem-solving discussion. Informed by research on the structure of emotion, a broad assessment of affect, including Negativity, Positivity, and Disengagement, was utilized to examine affect expressed by patients with schizophrenic disorders (N=91) and their family members during videotaped problem-solving discussions. Although individuals with schizophrenia were comparable to their family members in displays of Negativity, patients displayed less Positivity and greater Disengagement. Greater negative symptoms (in particular blunted or flat affect) were related to a general diminution of affective expression in the schizophrenia group. However, negative symptoms were unrelated to the emotional expression of family members. Other symptoms such as thought disorder and mood symptoms of anxiety, depression, and hostility were not related to displays of affect by either patients or their family members. The findings indicate the importance of examining domains of affect other than negativity and demonstrate that negative symptoms are related to interpersonal displays of affect in schizophrenia. Additionally, these results suggest that schizophrenic symptoms, by themselves, may contribute little to the conflict between patients and their family members.

Yen and Lundeen (2006) aimed (a) to understand meaning of caregiving, perceived social support and level of depression of caregivers during the transition phase immediately following a family members' discharge from the hospital to the community; (b) to determine the association between determinants and meaning of caregiving, perceived social support level of depression; (c) to determine the association between meaning of caregiving, perceived social support level of depression. Fifty five caregivers of schizophrenic patients were recruited from a private hospital in Taipei, Taiwan. Certain characteristics of caregivers were found to be associated with lower levels of depression, meaning of caregiving and perceived social support. Perceived social support was shown to be a mediator between the meaning of caregiving and caregivers' level of depression.

Eriksson and Svedlund (2006) studied the meaning of middle-aged spouse's experiences of living with a chronically ill partner. A purposive sample of four female spouses was selected for interviews using a narrative approach. When someone is diagnosed with a chronic illness, it is easy to understand that a considerable number of devastating consequences follow, both for the afflicted as well as for the family. Families often feel neglected and that their problems and needs are underestimated, if they do not personally draw attention to this fact. A phenomenological hermeneutic method, inspired by the philosophy of Ricoeur, was used when interpreting the interview text. The experiences of spouses living with a chronically ill partner often brought a feeling of detachment from their partner's lives. The women experienced changes in their relationships because of their partners' disabilities; they had emotions of loneliness, despite living together as a couple. Through their actions, the women sought reassurance and support in order to maintain a meaningful partnership with their spouses and this is expressed in three themes: feelings of limitation, the struggle of everyday life and a striving for normalization. Middle-aged women living with a chronically sick partner are still of an active disposition and regard themselves as still being in mid-life. They wish to be loved as a wife and not as a care provider.

Family Burden and Coping:

Birchwood and Cochrane (1990) reported taxonomy of coping behavior derived from interviews with relatives of schizophrenic patients. It was found that relatives adopted broad styles of coping across all areas of patients' behavior change. Relationships were uncovered between the styles and (a) relatives perceived control, burden and stress, (b) patients' social functioning, severity of behavioral disturbance and progress of the illness. It is suggested that advising relatives of changes in their coping styles in the course of family intervention must be tempered by an understanding of their origins in patients' behavior.

Koller (1991) explored family needs and coping behaviors when faced with the stress of a family member's critical illness. Family systems, crisis, and coping theories provided the conceptual frameworks for this study. A convenience sample of 30 family members of 22 critically ill patients completed the Critical Care Family Needs Inventory and the Jalowiec Coping Scale and responded to a seven-item semi-structured questionnaire. The need to know the patient's prognosis was identified as most important on the basis of item mean scores. The top ten identified needs centered around the need for assurance, information, and proximity. Hope was the most frequently used method of coping. Seven of the top ten coping methods most frequently used were also identified by family members as being most effective. Coping styles labeled confronting and optimistic were found to be most useful and effective overall. Interventions described by family members as helpful included: the provision of information, emotional support, and competence.

Solomon and Draine (1995) described factors associated with adaptive coping by family members with a psychiatrically disabled relative total of 225 family members of persons with serious mental illness were interviewed. Hierarchical regression analysis using five variables that may have contributed to adaptive coping was conducted. The five factors were demographic characteristics of the family member, severity of the relative's illness, the family member's subjective burden and grief, social support, and personal coping resources (self-efficacy and mastery). More extensive adaptive coping was associated with increased social support as measured by the density of the social network, the extent of affirming social support, and participation in a support group for families. Better coping was also associated with a greater sense of self-efficacy in dealing with the relative's mental illness. Adaptive coping was not associated with the severity of the relative's illness.

Magliano, Fadden, Madianos, de Almeida, Held, Guarneri, Marasco, Tosini and Maj (1998) explored the burden, the coping strategies and the social network of a sample of 236 relatives of patients with schizophrenia, living in five European countries. In all centers, relatives experienced higher levels of burden when they had poor coping resources and reduced social support. Relatives in Mediterranean centers, 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.

Magliano, Fadden, Economou, Xavier, Held, Guarneri, Marasco, Tosini and Maj (1998) studied the impact of social and clinical factors on the choice of coping strategies of a sample of 236 relatives of patients with schizophrenia, living in five European countries.. The adoption of problem-focused coping strategies was more frequent among young relatives and among relatives of younger patients, and was associated with higher levels of practical and emotional social support and of professional help. In contrast, emotion-focused strategies were more frequently adopted by relatives who had been living longer with the patient and who had poorer social support.

Saunders (1999) explored the influences of family coping behaviors, psychological distress, social support, and patient behavioral problems on family functioning in families providing care for a member with schizophrenia. Family stress theory provided the theoretical framework for this study. A convenience sample of 58 families providing care for a family member with schizophrenia was recruited from a metropolitan area in a southeastern state. The majority of the caregivers were mothers who were married and college educated. The mean age of the caregiver was 59 years, with an average of 17 years in providing care for the family member. Findings indicate that family psychological distress and patient behavioral problems are important factors in family functioning.

Scazufca and Kuipers (1999) examined how relatives coped with schizophrenic patients. Patients with DSM-III-R schizophrenia and their relatives were assessed just after hospitalization of the patients and nine months after discharge. Both assessments included the symptoms of the patients and the coping strategies, burden, distress and levels of EE of the relatives. Fifty patients and 50 relatives were assessed at inclusion, and 31 patients and 36 relatives at follow-up. Coping strategies were used more frequently at inclusion than at follow-up. Problem-focused coping was the strategy used more often at both assessments. Avoidance coping was strongly associated with burden, distress and high EE at both assessments. Ways of coping are influenced by relatives' perceptions of the situation with patients. Avoidance strategies seem to be less effective in regulating the distress of care-givers than problem-focused strategies.

Magliano, Fadden, Fiorillo, Malangone, Sorrentino, Robinson and Maj. (1999) explored subjective and objective burden, psychiatric symptoms and coping strategies in a sample of 90 key relatives and other relatives of patients with schizophrenia. The levels of burden on key relatives did not differ significantly from those on other relatives. Moreover, the risk of developing psychiatric symptoms was similar in the two subject groups at both centers. Significant correlations were found between key relatives and other relatives concerning the adoption of emotion-focused coping strategies.

Magliano, Fadden, Economou, Held, Xavier, Guarneri, Malangone, Marasco and Maj (2000) presented 1-year follow-up data from the BIOMED I study on family burden and coping strategies in schizophrenia. 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. 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. 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.

Karp and Tanarugsachock (2000) considerd how caregivers to a spouse, parent, child, or sibling suffering from depression, manic-depression, or schizophrenia manage their emotions overtime. By considering the turning points in the joint career of caregivers and ill family members, their analysis moves beyond studies that link emotions to particular incidences, momentary encounters, or discreet events. Four interpretive junctures in the caregiver-patient relationship are identified. Before diagnosis, respondents experience emotional anomie. Diagnosis provides a medical frame that provokes feelings of hope, compassion, and sympathy. Realization that mental illness may be a permanent condition ushers in the more negative emotions of anger and resentment. Caregivers' eventual recognition that they cannot control their family member's illness allows them to decrease involvement without guilt.

Ostman and Hansson (2001) indicated that problem solving coping strategies are used when the relatives are in situations amenable to change and that emotion-focused coping strategies are used in situations that are chronic and unchangeable. Furthermore, no differences in coping strategies were found between the relatives and a Swedish normative sample. No relationships were found between coping strategies and when the relative thought that the patient's mental health had led to mental problems in the relative or if the relative experienced that the relationship with the patient had been negatively affected by the mental illness.

Chakrabarti and Gill (2002) examined coping and its correlates in caregivers of bipolar patients, in comparison with schizophrenia. Structured assessments of dysfunction, burden, appraisal, social support available, and coping styles were carried out in caregivers of 38 bipolar patients and 20 patients with schizophrenia (ICD - 10 diagnoses). Caregivers used a wide variety of coping strategies, both problem and emotion-focused. In bipolar disorder, demographic parameters, illness duration, levels of dysfunction, burden and social support, and appraisal by caregivers demonstrated significant associations with coping styles of caregivers. Problem-focused coping strategies were more common in caregivers of bipolar patients and emotion-focused strategies in caregivers of schizophrenic patients. These differences appeared to be linked to differences in caregiver-burden and appraisal between the two groups. Appraisal by and burden on caregivers play a major role in determining their style of coping. These factors largely accounted for the differences in coping observed between caregivers of patients of bipolar disorder and schizophrenia, in this study. Reducing burden on caregivers and enhancing their awareness of illness could lead to adoption of more adaptive coping styles by them.

Rammohan, Rao and Subbakrishna (2002) examined the use of religious coping and its relation to psychological wellbeing in carers of relatives with schizophrenia. Sixty carers of patients with an ICD-10 diagnosis of schizophrenia were assessed on strength of religious belief, perceived burden, religious and other coping strategies and psychological wellbeing. Coping strategies of denial and problem solving, strength of religious belief and perceived burden were significant predictors of wellbeing. Strength of religious belief plays an important role in helping family members to cope with the stress of caring for a mentally ill relative. In addition to psychoeducation and problem solving coping, the role of religious coping in enhancing wellbeing of carers needs to be considered in family intervention programmes.

Lim and Ahn (2003) tested a staged causal model as the theoretical base to determine the relationships among knowledge, coping, and burden among Korean family caregivers with schizophrenic patients. The staged theoretical model contained three stages comprised of contextual variables (stage 1), interactional variables (stage 2), and perception variables (stage 3). The situational variables were caregiver knowledge, gender and age of family caregiver, duration of family caregiving, and the nature of the relationship between patient and family caregiver. The interactional variable was represented by two styles of copings (positive and negative). The perception variable was the perception of subjective burden. A total of 57 family caregivers with schizophrenic patients participated in this study. The instruments, Knowledge Scale, Coping Scale, and Burden Scale, were used. A path analysis was used in this model. The family caregiver's knowledge had an indirect impact on the burden through negative coping, indicating that the less caregiver's knowledge, the more caregivers use negative coping strategies, which results in caregiving perception of subjective burden. The results support that interactional outcome of coping mediates the relationships between caregiver's knowledge and the impact of subjective outcome of caregiving burden.

Chien and Norman (2003) identified the educational needs of Chinese families caring for a relative with schizophrenia. A cross-sectional survey was conducted in Hong Kong with a random sample of 204 family members caring for a relative with schizophrenia. A Chinese version of the Modified Educational Needs Questionnaire, validated in a previous study, was used to identify educational needs that family caregivers considered important in caring for mentally ill relatives. Educational needs perceived as important by caregivers included gaining information about early warning signs of illness and relapse, effects of medication and ways of coping with patients' bizarre and assaulting behavior. Gender, education level and closeness of the relationship with the patient correlated positively and significantly with need importance. Conversely, the relationship between duration of caring for patient and need importance correlated significantly but negatively, indicating the adverse effect of enduring mental illness on family caregivers' interest in mental health education.

Strous, Ratner, Gibel, Ponizovsky and Ritsner (2005) examined task, emotion, and avoidance-oriented coping strategies and explored associated clinical factors at exacerbation and stabilization phases of the illness. Patients with schizophrenia were examined twice (at exacerbation phase, N = 237 and at stabilization phase, N = 148) with the Coping Inventory for Stressful Situations, and standardized measures of psychopathology and emotional distress severity, side effects, insight, self-constructs, social support, and quality of life. Multiple regression analysis was performed with coping strategies as dependent variables at exacerbation and stabilization including analysis of any change during the 16-month follow-up period. Analysis indicated that emotion coping strategies were used more at exacerbation than at stabilization phase. Regression analysis demonstrated emotional distress to be a strong predictor of emotion-oriented coping, with self-efficacy and social support being the best predictors of task and avoidance coping strategies, respectively. Individual changes in these variables also appear to be important predictors for fluctuations of these coping strategies over time. Severity of symptoms accounted for 3.5% and 5.5% to 9% of the total variance of emotion- and task-oriented coping strategies, respectively. Emotion, task, and avoidance coping strategies and their predictors are influenced and may vary over the course of schizophrenia illness. Experienced emotional distress, self-efficacy, and social support are the best predictors of coping strategies both at exacerbation and stabilization phases of illness.

Moller-Leimkuhler (2005) tested following hypothesis: 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

Nehra, Chakrabarti, Kulhara and Sharma (2005) compared caregiver-coping in BPAD and schizophrenia and to explore the determinants of such coping. Illness variables and coping, burden, appraisal, perceived support, and neuroticism among caregivers were examined in 50 patients each of BPAD and schizophrenia and their caregivers. High levels of patient-dysfunction and caregiver-burden, low awareness of illness and low perceived control over patient's behavior were characteristic of both BPAD and schizophrenia, with no significant differences between the two groups on these parameters. Coping patterns were also quite alike, though caregivers of patients with schizophrenia were using some emotion-focused strategies significantly more often. Caregiver's gender, patient-dysfunction and caregiver-neuroticism had a significant influence on coping patterns, but explained only a small proportion of the variance in use of different coping strategies. Coping and other elements of the caregiving experience in BPAD are no different from schizophrenia. The relationship between caregiver-coping and its determinants appears to be a complex one. More methodologically sound and culturally relevant investigations are required to understand this intricate area, with the hope that a better understanding will help the cause of both patients and their caregivers.

Kumar, Singh and Mohanty (2006) explored which cluster of defenses is used by the female spouses of chronic schizophrenic patients. A sample of 30 female spouses of chronic schizophrenic patients was drawn from Institute of Mental Health and Hospital, Agra. Burden Assessment Schedule and Defense Mechanism Inventory (Female Version) was individually administered on each participant. The results indicated that the projection is the primary defense mechanism used by the spouses.

Gavois , Paulsson and Fridlund  (2006) developed a model of mental health professional (MHP) support based on the needs of families with a member suffering from severe mental illness (SMI). Twelve family members were interviewed with the focus on their needs of support by MHP, then the interviews were analyzed according to the grounded theory method. The generated model of MHP support had two core categories: the family members' process from crisis to recovery and their interaction with the MHP about mental health/illness and daily living of the person with SMI. Interaction based on ongoing contact between MHP and family members influenced the family members' process from crisis towards recovery. Four MHP strategies--being present, listening, sharing and empowering--met the family members' needs of support in the different stages of the crisis. Being present includes early contact, early information and protection by MHP at onset of illness or relapse. Listening includes assessing burden, maintaining contact and confirmation in daily living for the person with SMI. Sharing between MHP and family members includes co-ordination, open communication and security in daily living for the person with SMI. Finally, the MHP strategy empowering includes creating a context, counseling and encouraging development for the family members. The present model has a holistic approach and can be used as an overall guide for MHP support in clinical care of families of persons with SMI. For future studies, it is important to study the interaction of the family with SMI and the connection between hope, coping and empowerment.

Schmid, Neuner, Cording and Spiessl. (2006) explored the interrelation of subjective concepts to quality of life. Beside quality of life (WHOQOL-BREF) of 117 schizophrenic inpatients coping (FKV-LIS), locus of control (KKG), subjective well-being under medication (SWN-K), patient satisfaction (ZUF-8), caregiver burden (FBA) as well as sociodemographic and disease-related variables (German Basic Documentation System, BADO) were analyzed using Pearsonian correlation and regression analyses. Predictors of quality of life were physical well-being, social and occupational integration, active problem-focused coping, less minimization of illness, voluntary admission to hospital, high satisfaction with treatment and life, being aware of positive changes as a consequence of illness and low-rated caregiver burden. In contrast, locus of control, sociodemographic and disease-related variables as well as medication (conventional or atypical antipsychotics) had no significant influence. Active problem-focused coping, social and occupational integration and physical well-being play an important role for schizophrenic patients' quality of life and should be considered in treatment regimens

Family Burden and Personality of Family Members:

Hell (1982) examined the personality structures and the well-being of the partners of a representative sample of 103 married depressive or schizophrenic hospitalized patients. As a means of examination they used a semi-structured interview, the Giessen-test (Beckmann and Richter 1972, 1979) and the Eigenschaftsworterliste (Janke and Debus 1978). Concerning personality, the comparison of self-image of the partners with the patient's estimation of his or her spouse resulted in good mutual agreement. The spouses of schizophrenic and depressive patients differed neither as far as the average profiles were concerned nor according to the cluster-analysis findings. In addition to this, both groups differed only to a minor extent from a representative sample of the general population. Whereas personal attitude and the well-being of the marital partners were for the most part independent of the depressive or schizophrenic kind of illness, personality and well-being of the spouses correlated with the course of the illness. The more phases of illness the spouses had witnessed, the more unattractive, self-controlled and uncommunicative they proved to be and the less irritated and sensitive they were when the patient was hospitalized

Wolthaus, Dingemans, Schene, Linszen, Wiersma, Van Den Bosch, Cahn and Hijman (2002) examined the relationship between symptom severity in recent-onset schizophrenia and caregiver burden in a more differentiated way (i.e. five-symptom dimensions). Based on previous research, which shows that patients' personality traits influence the course of schizophrenia, they theorized that personality traits could also influence caregiver burden. So far, this hypothesis has never been studied. Therefore, the second purpose of this study is to examine whether patients' personality traits would contribute to caregiver burden. The results of this study showed that the disorganization symptom component was the predicting variable of the subscales supervision, tension, urging, distress, and the overall amount of caregiver burden in a linear regression analysis. Personality traits of patients played no substantial role in caregiver burden. These findings suggest that psychoeducational programs should address the severity of disorganization symptoms to reduce caregiver burden in the early phase of schizophrenia.

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