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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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