Dissertation [11 October 2001]

1. Relationship Between Psychopathology
and Problem Behaviour of
Schizophrenic Patients and Burden
Experienced by Primary Caregivers
Supervised by Professor Mohd Razali Salleh

2. Introduction
Deinstitutionalization
Expressed Emotion and Burden
Concept and Definition of Burden
Effect of Severe Mental Illness
Magnitude and Prevalence of Burden
Determinants of Burden

3. Deinstitutionalization
“Contemporary deinstitutionalization policy tries to unite
patients with their families as a means of providing
community care. This policy catapults the patients'
relatives into a caregiving role for which they are
untrained and unprepared and from which they have
been systematically excluded in the past.”
(Lefley, 1996).

4. Hospital
Community Psychiatry
Relative / Caregiver
Mental Institution

5. Deinstitutionalization in Malaysia
The number of long-stay patients in two central mental
hospitals in peninsular (west) Malaysia was slowly
declining and the psychiatric units of general
hospitals became overcrowded.
Year Bed Population
1967 7500 10 mil
1988 5852 18 mil
2001 4800 22 mil

6. Studies on EE and Burden
Jackson et al.
(1990)
High criticism in relatives was associated with higher level
of burden
Smith et al.
(1993)
High-EE relatives reported higher levels of disturbed
behaviour in patients, more subjective burden, and
perceived themselves as coping less effectively than low-
EE relatives
(Otsuka et al.
1994)
High-EE relatives also report that patients function less
well than low-EE relatives
Scazufca &
Kuipers (1996)
High-EE relatives had considerably higher burden of care
and perceived more deficits in patients’ social functioning
than low-EE relatives

7. Burden and EE
“Expressed emotion (EE) and family burden are best
conceptualized as interactive, rather than
unidirectional, process” (Mueser & Glynn, 1990)
Disruptive and
symptomatic
patient behaviours
Relatives will respond
with stressful (high-EE)
communications
Increase the chance
May worsen
Burden
Expressed
Emotion

8. Concept of Burden
“Burden is a loose construct that has been
defined in various ways, but usually includes
measures of subjective and objective distress
as well as measures of the way in which a
caregivers life-style has been altered by
financial difficulties, curtailed social activities,
loss of vacations etc”
(Heru, 2000)

9. Definition of Burden
Objective
Observable concrete costs to the family resulting
from mental illness, e.g., disruption to everyday
life in the household and financial loss
Subjective
The individual's personal appraisals of the
situation and the extent to which people perceive
they are carrying a burden

10. Relationship Between Objective and
Subjective Burden
Thompson &
doll, 1982
While there was a significant relationship between objective
and subjective burden in most families, a disparity suggested
that some families did show resilience, in that high objective
burden did not necessarily result in, or was not necessarily
associated with high subjective burden. This resilience may
have been experienced as reduced burden or as reward in
caregiving.
Noh &
Avisan, 1988
Subjective burden has been found to be a more powerful
predictor of distress than the patients’ symptomatology or the
objective burden of the caregiver.

11. Effect of severe
mental illness
Patients
Caregivers
Impeded
self-care
Reduced employment
opportunities
Obstacle to
independent living
Diminish life
satisfaction
Diminished
capacity for social
relationships
Emotions of shame,
guilt and anger
Stigma and
social isolation
Disruption
of lives
Uncertainty
Feelings of
loss and grief
Stressful
caregiving role

12. Effect of Severe Mental Illness
Reduced employment opportunities
Diminish life satisfaction
Obstacle to independent living
Impeded self-care
Diminished capacity for social
relationships
Stigma and social isolation
Uncertainty
Emotions of shame,guilt and anger
Stressful caregiving role
Feelings of loss and grief
Disruption of lives
CaregiversPatients

13. Magnitude of Burden
Mental disorders as a cause of disease
burden, accounted for a quarter of the
world's disability, and 9% of the total
burden
Five of the 10 leading causes of disability
worldwide are mental disorders: major
depression, alcohol use, bipolar affective
disorder, schizophrenia and obsessive-
compulsive disorder
(Global burden of disease project, Murray &
Lopez, 1996)

14. Worldwide Prevalence of Burden
The prevalence of schizophrenic relatives who had a
high possibility of having mental disorders were high.
Gibbons et al. (1984) 32%.
Oldridge & Hughes (1992) 36%.
Scottish schizophrenia research group (1987) 77%.
Salleh (1994) 26%.

15. Prevalence in Kelantan
Salleh (1994) found the prevalence of
neurotic illnesses among primary carers
of schizophrenia in Kelantan to be 26%
with nearly half of them had neurotic
depression.

16. Determinants
of burden
Stressors
Contextual
variables
Number of
symptoms
Type of
symptoms
Severity of
symptoms
Race
Social
support
Living
environment
Health
status
Gender
Prognosis
Length
of illness
Socio-
economic

17. Determinantsofburden
StressorsContextual
Numberof
symptoms
Caregivers experienced more depressive
symptoms when their family members presented
more behavioral problems (Haley et al. 1987;
Struening et al. 1995)
Severityof
symptoms
The severity of patients’ symptoms is the only
variable that has been shown to have a strong
association with burden (Schultz et al. 1995)
Typeof
symptoms
Gibbons et al. (1984) found that the most
distressing and difficult behaviour to cope with was
the product of active psychosis such as violence,
aggression and odd behaviour
Stressors

18. Determinantsofburden
StressorsContextual
Gender
Generally female caregivers report more
depressive symptoms than men (Gallagher et al.
1989; Schulz & Williamson, 1991)Living
environment
Cohen & Eisdorfer (1988) found that caregivers
who lived with ill relatives had higher depression
scores than caregivers who did not
Healthstatus
Morrissey et al. (1990) found that caregiver health
status was a significant predictor of depression for
both workers and homemakers
Socialsupport
Schulz & Williamson (1991) showed that less
perceived social support had a positive and
significant association with caregiver depression
Contextual

19. Objectives and
Hypotheses

20. Objectives of the Study
Burden
on caregivers
Psychopathology
of schizophrenic patients
Social behaviour problem
of schizophrenic patients
Sociodemographic variables
of patients and relatives

21. Hypotheses of the Study
1. Both PANSS positive and negative subscales have
positive correlation with total objective burden
2. The correlation of PANSS positive subscale is
stronger than negative subscale
Psychopathology
of schizophrenic patients
Burden
on caregivers
Positive symptoms
Negative symptoms
Objective burden
Subjective burden

22. 3. Total SBS score has positive correlation with total
objective burden
Social behaviour problem
of schizophrenic patients
Burden
on caregivers
Objective burden
Subjective burden
Total SBS

23. 4. Sociodemographic variables of patients and
caregivers are not statistically significant with
amount of burden
Burden
on caregivers
Objective burden
Subjective burden
Sociodemographic
variables
Patients
Relatives

24. Methodology
Setting
Sample
Instruments
Procedures
Statistical Analyses

25. Setting
Instruments
Procedures
Sample
Statistical
analyses
Methodology
Positive and Negative
Syndrome Scale
Social Behaviour
Schedule
Burden on Family
Interview Schedule
Outpatient clinic
HUSM
Consent
Interview
Records
Criteria
Sample
size
SPSS 9.0

26. Criteria for Patients
Inclusion
Aged 18 to 65 years old
Diagnosis of schizophrenia according to ICD-9 or ICD-10
Lived with a relative for a minimum period of 6 months
before the interview
Lived within Kelantan state
Informed consent to be interviewed and to have the
relative interviewed
Exclusion
Hospitalization during the last month
Clinically significant organic brain syndrome, or if there
were a primary problem of drug or alcohol abuse

27. Criteria for Relatives
Inclusion
Aged at least 18 years old
Primary caregiver of patient which is defined as someone
living in the same household, feel most responsible
for patient, having most face-to-face contact and with
primary caretaking role
Lived within Kelantan state
Informed consent to be interviewed
Exclusion
Disabling physical or psychiatric disorder or drug abuse

28. Positive and Negative Syndrome Scale
Author Kay et al. 1987
Purpose Typological and dimensional assessment of
schizophrenic phenomena
Administration Formal semi-structured clinical interview and
other informational sources
Content 30-item, seven-point rating scale distinguishes
three symptomatic dimension; 7 item constitute a
positive subscale, 7 items constitute a negative
subscale and 16 items constitute a general
psychopathology subscale

29. Social Behaviour Schedule
Author Wykes & Sturt, 1986
Purpose Rating scale of specific problem behaviour that
describe the major difficulties exhibited by
patients with long-term impairments that usually
result in a dependence on or admission to either
day or residential psychiatric services
Administration Informant's description of the patient or client's
behaviour over the past month
Content 21 items, five-point rating scale from no problem
or acceptable behaviour to serious problem

30. Burden on Family Interview Schedule
Author Pai & Kapur, 1981
Purpose Assessment of burden placed on families of
psychiatric patients living in the community
Administration Semi-structured interview schedule
Content 24 items grouped under 6 different categories. A
3-point scale is used to rate each item; no burden
(0), moderate burden (1) and severe burden (2).
The subjective burden is assess by asking a
standard question

31. Procedures
Identification of patient
who was accompanied
by a relative
The patient
fulfilled the criteria
of the study
Informed consent from
relatives and patients
Collection of
demographic data
from records and interview
Assessment of
psychopathology
using PANSS
Assessment of
social behaviour
problem using SBS
Assessment of
caregiver’s burden
using BFS
The relative
fulfilled the criteria
of the study

32. Statistical Analyses
Characteristics of patient and caregiver
(sociodemographic, psychopathology, social and
behaviour problem and burden)
Descriptive statistic
and frequency
Correlation between burden of caregiver (BFS)
and patient's or caregiver’s sociodemographic
characteristics (categorical data)
One-way analysis of
variance (ANOVA)
Difference between groups for categorical
variables having p<0.05
Bonferroni multiple
comparison test
Correlation between burden of caregiver (BFS)
and patient's psychopathology (PANSS) or
patient's social behaviour (SBS)
Pearson’s correlation
coefficients

33. Results
Sociodemographic Characteristics
Psychopathology of Patients
Social and Behaviour Problem of Patients
Burden on Caregivers
Correlations Between Variables

34. Sociodemographic Characteristics
Patients
Roughly 2/3 male, 4/5 chronic schizophrenia, 1/5 with
comorbid diagnosis, 2/3 single, 9/10 had at least
secondary education, 3/4 unemployed and 3/4 without
income
Caregivers
Roughly 2/3 female, 3/4 parents, 3/4 married, 4/5 had at
least secondary education, 7/8 stayed together more than
5 years and 2/3 household income less than MYR 1500.

35. Psychopathology
Positive
3 items had mean score more than 3 – P1 delusion, P3
hallucinatory behaviour and P6 suspiciousness /
persecution
Negative
4 items had mean score more than 2 – N1 blunted affect,
N2 emotional withdrawal, N4 passive social withdrawal
and N6 lack of spontaneity

36. Social and Behaviour Problem
5 commonest problem behaviours
(scoring 2 or more on the Social Behaviour Schedule)
Active
psychosis
Laughing or talking to self (42%), hostility (40%),
violence or threats (33%), odd or inappropriate
conversation (29%)
Chronicity
Poor self-care (29%)

37. Burden on Caregivers
Objective
4 commonest severe burden were expenses of patient’s
illness (35.6%), patient’s illness using up another person’s
holiday and leisure time (26.7%), ill effect on general
family atmosphere (26.7%) and patient’s behaviour
disrupting activities (24.4%).
Subjective
40% of primary caregivers reported severe subjective
burden

38. ObjectiveBurden
Financial
burden
Disruption of
routine family
activities
Disruption of
family leisure
time
Disruption of
family
interaction
Effect on
physical health
of others
Effect on
mental health of
others
Loss of patient’s income 15.6%
Loss of income of other family
members
6.7%
Expenses of patient’s illness 35.6%
Expenses due to other necessary
changes in arrangement
15.6%
Loan taken or saving spents 0%
Any other planned activity needing
finance postponed
0%
Financial
Burden

39. ObjectiveBurden
Financial
burden
Disruption of
routine family
activities
Disruption of
family leisure
time
Disruption of
family
interaction
Effect on
physical health
of others
Effect on
mental health of
others
Patient not attending work, school,
etc
0%
Patient unable to help in household
duties
13.3%
Disruption of activities of other
members of the family
15.6%
Patient’s behaviour disrupting
activities
24.4%
Neglect of the rest of the family due
to patient’s illness
2.2%
Disruption of
routine family
activities

40. ObjectiveBurden
Financial
burden
Disruption of
routine family
activities
Disruption of
family leisure
time
Disruption of
family
interaction
Effect on
physical health
of others
Effect on
mental health of
others
Stopping of normal recreational
activities
6.7%
Patient’s illness using up another
person’s holiday and leisure time
26.7%
Lack of participation by patient in
leisure activity
6.7%
Planned leisure activity abandoned 2.2%
Disruption of
family leisure
time

41. ObjectiveBurden
Financial
burden
Disruption of
routine family
activities
Disruption of
family leisure
time
Disruption of
family
interaction
Effect on
physical health
of others
Effect on
mental health of
others
Ill effect on general family
atmosphere
26.7%
Other members arguing over the
patient
2.2%
Reduction or cessation of interaction
with friends and neighbours
2.2%
Family becoming secluded or
withdrawn
2.2%
Any other effect on family and
neighbourhood relationship
4.4%
Disruption of
family
interaction

42. ObjectiveBurden
Financial
burden
Disruption of
routine family
activities
Disruption of
family leisure
time
Disruption of
family
interaction
Effect on
physical health
of others
Effect on
mental health of
others
Physical illness in family members 2.2%
Any other adverse effect on others 2.2%
Effect on
physical health
of others

43. ObjectiveBurden
Financial
burden
Disruption of
routine family
activities
Disruption of
family leisure
time
Disruption of
family
interaction
Effect on
physical health
of others
Effect on
mental health of
others
Any member seeking professional
help for psychological illness
0%
Any members becoming depressed,
weepy and irritable
11.1%
Effect on
mental health
of others

44. Relationship Between Sociodemographic
Characteristics and Burden
Patients
Gender, presence of comorbidity,
duration of treatment, level of
education, marital status,
employment status and monthly
income
None was significant
Caregivers
Gender, level of education, marital
status, relation to patient, duration of
staying together, employment status,
household income and number of
people living together
Employment status and
household income were
significant at p<0.05 and 0.001
respectively

45. Bonferroni multiple comparison test was done for sociodemographic
variables having p < 0.05 to look for difference between groups
Employmentstatus
Housewives (n=11) experienced significantly more burden
compared to those who work as government servants
(n=8), self-employed (n=9) and pensioner (n=8)
Householdincome
Caregivers with household income of less than MYR500
experienced significantly more burden compared to
MYR500-1500 group

46. Relationship Between Patient’s
Psychopathology and Caregiver’s Burden
Total Objective Burden
Subjective
Burden
Subscales
Positive subscale r=0.789, total PANSS
r=0.626, general psychopathology subscale
r=0.523 and negative subscale r=0.476
Positive subscale
r=0.791 and negative
subscale r=0.495
PANSSItems
5 items had moderate correlation i.e.
delusions r=0.649, hostility r=0.648,
hallucinatory behaviour r=0.639,
suspiciousness / persecution r=0.590 and
emotional withdrawal r=0.511

47. Correlation Between BFS Categories and
PANSS Positive and Negative Subscales
Objective Burden Category
Positive
subscale
Moderate correlation with 3 burden subcategories i.e. disruption of
routine family activities r=0.778, disruption of family interaction
r=0.680 and disruption of family leisure time r=0.624
Negative
subscale
Moderate correlation with disruption of family leisure time r=0.504

48. Relationship Between Social and
Behaviour Problem and Burden
Total Objective Burden
Subjective
Burden
No of problem
behaviour
r=0.881 r=0.809
Total SBS score r=0.863 r=0.806
SBS items
Hostility (r=0.748)
Overactivity and restlessness (r=0.700)
Destructive behaviour (r=0.648)
Laughing or talking to self (r=0.671)
Odd or inappropriate conversation (r=0.586)
Poor self care (r=0.563)
Inappropriate social mixing (r=0.549)
Poor attention span (r=0.532)

49. Summary

50. DeterminantsofBurden
Stressor
Number of
symptoms
Type of
symptoms
Severity of
symptoms
Contextual
Patient
characteristics
Caregivers
characteristics
Number of
symptoms
Psychopathology
Moderate correlation with positive
subscale, total PANSS and general
psychopathology scale
Weak correlation with negative
subscale
Severity of
symptoms
ProblemBehaviour
Number of problem behaviour and total
SBS score had strong correlation with
total objective burden and subjective
burden

51. DeterminantsofBurden
Stressor
Number of
symptoms
Type of
symptoms
Severity of
symptoms
Contextual
Patient
characteristics
Caregivers
characteristics
Psychopathology
Delusions, hostility, hallucinatory
behaviour, suspiciousness / persecution
and emotional withdrawal
ProblemBehaviour
Hostility, overactivity and restlessness,
destructive behaviour, laughing or
talking to self, odd or inappropriate
conversation, poor self care,
inappropriate social mixing and poor
attention span
Type of
symptoms

52. DeterminantsofBurden
Stressor
Number of
symptoms
Type of
symptoms
Severity of
symptoms
Contextual
Patient
characteristics
Caregivers
characteristics
None was significant
Patient
characteristics

53. DeterminantsofBurden
Stressor
Number of
symptoms
Type of
symptoms
Severity of
symptoms
Contextual
Patient
characteristics
Caregivers
characteristics
Employmentstatus
Housewives have more burden
compared to government servant, self-
employed or pensioner
Householdincome
Group with income less than MYR500
has more burden than MYR500-1500
per month groupCaregiver
characteristics

54. Discussion

55. Extent of Burden on Caregivers
The commonest severe objective burden affecting at least one
third of the caregivers were expenses of patient’s illness,
which is categorized under financial burden.
Sociodemographic Characteristics of Sample
Patients 71% unemployed, 73% no income
Caregivers
35% monthly income less than MYR500 and
33% MYR500-1500

56. Three more items, namely patient’s illness using up another
person’s holiday and leisure time, ill effect on general
family atmosphere and patient’s behaviour disrupting
activities, affected about one quarter or caregivers
Salleh, 1994
4 items were found to be significantly different between
neurotic and normal caregivers
Ill effect on general family atmosphere
Patient’s behaviour disrupting activities
Disruption of activities of other family members
Family members becoming depressed, weepy and irritable.

57. 40% of primary caregivers reported severe subjective burden.
This was higher compared to Salleh (1994) study which found
the percentage of severe subjective burden were 35% and
20% for neurotic and normal caregivers respectively.
More chronic illness and greater proportion of elderly mothers probably
explains the greater percentage of caregivers experiencing severe
burden.
Patients Caregivers
This study
Majority (58%) had been
treated for more than 5 years
3/4 parents,
62% female
Salleh, 1994
Majority had duration of
treatment less than 5 years
1/3 parents,
69% female

58. Burden and Sociodemographic
Characteristics
Sociodemographic Characteristics
Patient Caregiver
This Study None
Employment status and monthly
income less than MYR 500
Salleh, 1994 None None
Nor Hayati, 1995 None Families with lower incomes
Martyns-Yellowe,
1992
None
Rural setting and poorer economic
circumstances of the family

59. Burden and Sociodemographic
Characteristics
Caregivers’ employment status and monthly household income
were significantly correlated with amount of burden. These
findings were similar to Nor Hayati and Maniam (1995) study
of 80 urban chronic schizophrenic families, which found that
the families with lower incomes had significantly greater
amount of burden.

60. The Relationship Between Patient’s
Psychopathology and Burden on Caregiver
This study showed that not only positive symptoms had stronger
correlation than negative symptoms, but they also caused a
wider disruption across the family functioning, both objectively
and subjectively.
Thus, it can be concluded that the caregivers in this study found
the positive symptoms were more distressing than the
negative symptoms.
Gibbons et al.,
1984
The most distressing and difficult behaviour to cope
with was the product of active psychosis such as
violence, aggression and odd behaviour

61. The Relationship Between Patient’s Social and
Behaviour Problem and Burden on Caregiver
Number of problem behaviour and total SBS score had strong
correlation with total objective burden and subjective burden.
The type of social behaviours are clearly the product of active
psychosis and mirror PANSS positive scale items, that is
hostility, excitement and hallucinatory behaviour.
SBS items 4 items with strongest correlation with amount of burden hostility,
overactivity and restlessness, destructive behaviour, laughing or
talking to self.
Problem
behaviours
3 most frequent were laughing or talking to self, hostility and
destructive bahaviour.

62. This study The type of social behaviours having strongest
correlation with buden were clearly the product of active
psychosis
Gibbon et al., 1984 The kind of behaviour relatives found most distressing
and difficult to cope with was that directed towards
them (such as aggression) or were the product of active
psychosis.
Salleh, 1994 The disruption was mainly caused by behaviour
problem the product of active psychosis
Gopinath &
Chaturvedi, (1991)
Behaviours related to activity and self-care were
perceived to be most distressful, and not aggressive or
psychotic behaviour.

63. Limitations of This Study
Many of these patients were recruited into the study around
the time of the hospital admission, which often represented a
phase of acute decompensation
The initial symptoms, which include irritability and agitation, eventually
progressed to open hostility and anger, and the accompanying behaviour
was frequently assaultive and explosive. Violence presumably remits as
these acute symptoms improve (Carlson & Goodwin, 1973)
Thus, we cannot infer that the relatively high levels of burden reported in this
study will generalise to periods of symptom remission
PatientsCaregiversInterviewerPatients

64. PatientsCaregiversInterviewer
Relatives in regular contact with the patient’s mental health
professional reported more caregiving strains than those not
in contact (Winefield & Harvey, 1993 and Schene et al. 1998)
First, these relatives belong to a subgroup that experiences
caregiving as more burdensome than other relatives. As a consequence,
they themselves tend to seek or maintain contact with the patient's mental health
professional or this professional maintains contact with them
Second, contact with mental health professionals may influence the
way relatives interact with the patients themselves. They may, more than
relatives not in contact, see themselves as cotherapists, perhaps even encouraged by
clinicians to take that particular role, but nevertheless more often burdened with the
task of supervising and urging the patient
Third, the fact of seeing a doctor may itself imply a crisis in the
patient's health, a deterioration of symptomatology, that increases
caregiver distress
Caregivers

65. PatientsCaregiversInterviewer
The fact that the same interviewer rated patients
and relatives could have biased the rating of the
instruments.
However, this cannot be overcome as this study
was to be conducted by one person
Interviewer

66. Conclusion

67. Conclusion
The extent of burden was extensive with 40% of primary
caregivers reported severe subjective burden. An expense of
patient’s illness was the commonest severe objective burden
affecting one third of caregivers.
Type of psychopathology and social behaviour problem most
burdensome on caregivers were the product of active
psychosis.

68. Risk of mental illness
among caregivers Burden on caregivers
Expressed emotionPsychopathology and social
behaviour problem of patients