Perceived Burden and Social Support of Caregivers in Early onset Psychosis & Epilepsy:
A Comparative Study
Narendra Kumar. Singh*, Dipanjan Bhattacharjee, Nishant Goyal, Sanjay Kumar Munda & S.H. Nizamie
KEYWORDS: Caregivers, Social Support,
ABSTRACT:
Burden & Psychosis
Perceived burden and social support are two
INTRODUCTION:
very important aspects related to care giving
Epilepsy and psychosis are two
of the patients with psychological disorders,
especially to patients who have chronic
course of illness. Many studies were done on
patients with severe as well as chronic
mental disorders but not much works were
done
on
psychosis
adolescent
and
populations
common
with
neurological
disorder like epilepsy. We intended to study
perceived burden and social support of the
60 caregivers of the adolescents with
psychosis and epilepsy (30 each in psychosis
and epilepsy patients).
We have found that
caregivers of the adolescents with psychosis
have been experiencing higher level of
burden of care in comparison to caregivers
of the adolescents with epilepsy. We have
also
observed
that
caregivers
of
the
adolescents with psychosis also tend to
perceive less social support from their
respective social networks than that of
caregivers of the adolescents with epilepsy.
neuropsychiatric conditions that know no
gender,
geographic,
social,
or
racial
boundaries. These two disorders affect
people of all ages, all countries and cultures.
But having been exposed to these disorders
at the adolescence could make an individual
more susceptible to have more complicated
form of illness and more compromised
socio-occupational functions. Psychosis and
epilepsy are two major neuropsychiatric
disorders with a chronic course which makes
it
critical
for
caregivers
to
provide
appropriate care which is often found to be a
cumbersome task. Epilepsy happens to be
the commonest neurological disorder in
childhood and adolescence. The prevalence
rate of epilepsy in children is approximately
0.5%. It is to be noted that nearly 50% of the
cases of various forms of epilepsy occur
before the age of 5 years, whereas 75% have
their onset before the age of 20 years1. Early
onset schizophrenia is associated with high
growth and developmental process
degree of impairment to patients and
children and adolescents. And such illnesses
financial burden to families. Early onset
put caregivers into a troubled situation of
schizophrenia is considered as more severe
handling pressure of caregiving to their
form of schizophrenia. Epidemiological
ailing children as well as to keep their roles
study like Gillberg and Steffenburg study2
in family and domestic affairs intact. Almost
showed that prevalence of early onset
same kind of picture could also be found in
schizophrenia (10 years of age or younger)
families with children and adolescents with
rates at 1.6 per 100,000 in western Sweden.
epilepsy. Factors like pervasion of illness
Subsequently Remschmidt et al3 observed
related pressure in to all family activities
that approximately one in 10,000 children
and functions, feeling of being fizzled out by
tend to develop schizophrenia before 18
the burden of care giving and feeling of
years of age. In case of bipolar disorder
stigma could often be proved to be limiting
prevalence rate in children 5–18 years old is
factors to the successful implementation of
4%, and of any mood disorders 27%4.
treatment
To maintain the continuity and
and
adolescents.
rehabilitation
These
of
disorders
of
these
inflict
objective of the quality of care-giving for a
enormous physical, psychological, social,
long term it is really essential to take into
and economic burdens on individuals,
account the social support and burden of
families, and countries especially because of
illness for the patient and caregivers which
misunderstanding, fear, and stigma of
indeed is a daunting task. Chronic ailments
epilepsy.
Family
like early onset psychosis and epilepsy have
multiple
psychosocial
a very antagonistic impact which is not only
problems. Schizophrenia is a chronic mental
limited to the affected person but also cause
disorder associated with health, social and
significant anomalies to family system.
financial burden for a long duration,
Epilepsy to children often causes multiple
affecting not only for patients but also for
stressors, adjustment related problems and
families, other caregivers, and the wider
disturbances in family relations5, 6. Severe
society. Caring for a family member who is
psychotic disorder like schizophrenia and
having schizophrenia is an enduring stressor
bipolar disorders at the early phase of life
and causes considerable amount of burden7.
usually causes a great deal of impact on the
caregivers
and
also
face
economic
This study would look into the
ICD-10-DCR8 and International League
matter related to social support and burden
Against Epilepsy (ILAE) criteria9. Both the
of care of the caregivers of the early onset
male and female adolescents who were
patients with epilepsy and psychosis. Such
within the age range of 13-17 years with
kind of comparative study is very much
these two diagnoses were selected in the
handful in developing world so it will help
study. But the patients with co-morbidities
the mental health clinicians to have more
like mental retardation, learning disorder,
knowledge regarding this issue and the
conduct disorder and ADHD were excluded
management of this disorder.
from the study. In case of the caregivers
only first degree relatives who stay with the
METHOD & MATERIALS:
patients at the same household at permanent
Design
basis and actively involved and responsible
This study was a cross-sectional and hospital
for the treatment and aftercare of the
based one and aimed to examine the
patients for ≥2 years for continuous basis.
difference in the social support and burden
The minimum age of the caregivers taken in
of care between the caregivers of the
the study was 18 years and in both the
patients with early onset psychosis and
groups caregivers were matched as per age,
epilepsy. This study was done at the “Centre
sex,
for Child and Adolescence Psychiatry
Caregivers who had been found to have
Department” and “Epilepsy Clinic” of the
major
Central Institute of Psychiatry, which is a
substance addiction and who did not give
Government
tertiary
the informed consent for participating in the
psychiatry and neurology treatment and
study were excluded. In this study joint
research institute. The samples of the study
family was defined as: it is a family system
were recruited through purposive sampling
where individuals from many generations
method.
live under the same roof and there is
adolescent
of
The
India
two
patients
owned
groups
with
consist
early
of
onset
education
and
debilitating
collectiveness
in
family
physical
financial
income.
illnesses,
and
other
psychosis and epilepsy. The diagnoses of
responsibilities in the family and jointness in
these two groups were made by the
taking responsibilities of the children.
consultant psychiatrists of the institute as per
Participants
the standard diagnostic guidelines, e.g.,
The samples consisted of 30 each key
Interview Schedule11 was used in this study
relative of the adolescent patients with
to measure the burden of the caregivers.
psychosis and epilepsy who were being
This semi-structured interview schedule has
diagnosed by the consultant psychiatrists as
24 items rated on a 3- point scale and
per the ICD-10-DCR6 and International
grouped into five areas, namely, financial
League Against Epilepsy criteria7. In the
burden, disruption of family routine, of
psychosis group adolescents patients with
family leisure, and of family interactions,
the diagnosis of either schizophrenia or
effect on physical health of relatives and on
Bipolar Affective Disorders (with psychotic
mental health of relatives. A standard
symptoms) were selected for the study.
question to assess ‘subjective’ burden is also
included. The scale has been used in several
Procedure
Before recruiting the samples, they were
briefed about the objectives of the study and
written informed consent was taken from
them.
To
collect
the
necessary data
instruments like a specially designed sociodemographic data sheet, the Social Support
Questionnaire8
and
Family
Burden
Interview Schedule9 were applied.
countries and in a number of different
patient groups. Psychometric properties
have been found to be satisfactory.
Statistical Analyses
Descriptive statistics (mean and standard
deviation) were used to describe sample
characteristics. Inferential statistics like the
Chi-square and t-test and were used to
Measures
The measure used in the present study
includes Socio-demographic data sheet,
Social Support Questionnaire10, Family
Burden
studies from India and other developing
Interview
Schedule11.
Social
Support Questionnaire (SSQ) 10 is the Indian
adaptation of the Social Support Scale of
Pollack and Harris measures perceived
social support. It has 18 items rated on a 4point scale. Higher scores denote more
support available. The Family Burden
compare the level of burden of care and
social support of the caregivers of the two
groups’ of adolescent patients. Correlationcoefficient was used to see the relationship
between
various
socio-demographic
variables and areas of burden of care and
social support.
RESULTS:
As per the socio-demographic background
of routine family activities’, ‘disruption of
of
family
the
adolescent
patients
and
their
leisure’,
‘disruption
of
family
caregivers with psychosis and epilepsy is
interaction’ and ‘effects on mental health of
concerned we found that in epilepsy group
others’ between the caregivers of the
most of the patients as well as their
adolescents with psychosis and epilepsy. We
caregivers were from the joint family
also found that caregivers of patient with
background (n=24). Whereas, in psychosis
psychosis group do perceive less social
group patients were equally from both joint
support
and nuclear families. Significant difference
adolescents with epilepsy (Table-2). In case
was seen between these two groups in the
of early onset psychosis we have noticed
variable, e.g., type of family (table-1). The
that educational level of caregivers have
difference was there since in epilepsy group
significant bearing on the two domains of
majority of patients and their caregivers
Family Burden Interview Schedule11, viz,
were from joint families. In terms of
financial and subjective burden. It signifies
religious background we found that most of
that higher the level of education to
the patients and their caregivers were to be
caregivers lower the level of burden in those
Hindu by religious affiliation. Most of the
areas. Significant negative correlation was
patients in either group did not have the
seen between caregivers’ age and one
family history of mental and/or neurological
domain
illnesses like psychosis or epilepsy. We
Schedule11, e.g. family interaction. It confers
found that parents happened to be the
that deleterious impact of illness on family
caregivers to the majority of the patients of
interaction would be low if caregivers are
both groups. Significant difference was
younger or vice versa. This study also
noted between these two groups in terms of
showed that financial burden would likely to
the marital status of the caregivers In
be low to patients who have recently
psychosis group 4 caregivers of the patients
developed illness (i.e. duration of illness has
were reported to be either unmarried or
significant
widowed or divorced (Table-1.1). We found
financial burden) (Table-3.1). In case of
significant difference in the areas of Family
early onset epilepsy significant negative
Burden Interview Schedule i.e., ‘disruption
correlations were observed between age of
as
of
compare
Family
negative
to
caregiver
Burden
of
Interview
correlation
with
onset and two domains of Family Burden
Schedule11
caregivers and two domains of Family
and
Burden Interview Schedule11, i.e. routine
subjective burden). In this group significant
family activities and family interactions. It
positive correlation was seen between
meant that higher the educational level of
financial burden and age of the caregivers. It
caregivers higher the level of burden on two
means as the age of the caregivers’ increases
areas of family burden measuring scale, e.g.
the financial burden would also increase.
routine
Significant positive correlations were also
interaction (Table-3.2).
Interview
noticed
between
(financial
educational
level
family
activities
and
family
χ2
df
p
.190
1
.573
.120
2
.643
.126
2
.372
.012
1
.015*
.146
2
.353
of
Table-1.1 Socio-demographic variables of patients of early onset psychosis and epilepsy
S no.
Variables
1
Sex
4
Family Income
6
Religion
7
Type of family
8
Domicile
Male
Female
<5000
5001-10000
>10001
Hindu
Muslim
Christian
Joint
Nuclear
Extended
Rural
Urban
Semi urban
GROUPS
Psychosis
Epilepsy
(n-30)
(n-30)
22
20
8
10
17
15
5
8
8
7
20
20
5
8
5
2
15
24
15
6
0
0
20
21
8
9
2
0
*P<0.05
Table-1.2 Socio-demographic variables of caregivers of early onset psychosis and epilepsy
S no.
Variables
1
Sex
2
Marital status of
caregivers
Occupation
3
5
Relationship with
patient
*P<0.05
Male
Female
Married
Unmarried
Employed
Unemployed
Parents
Siblings
GROUPS
Psychosis
Epilepsy
(n-30)
(n-30)
23
24
7
6
26
30
4
0
21
23
9
7
23
28
7
2
χ2
df
p
.234
2
.754
.056
1
.038*
.195
1
.559
.060
1
.071
Table- 1.3 Socio-demographic variables of caregivers of early onset psychosis and epilepsy
Variables
GROUPS
Psychosis
Epilepsy
(n-30)
(n-30)
Mean±SD
Mean±SD
40.40±9.48
41.63±6.04
11.03±6.72
12.73±5.55
Age
Education
t
df
p
-.660
-1.066
58
58
.551
.291
Table-2 Comparison of social support & burden of caregivers of both groups
Variable
(Scores obtained in Social Support
Questionnaire10 & Family Burden Interview
Schedule11)
Social support
Financial burden
Disruption of routine family activities
Disruption of family leisure
Disruption of family interaction
Effect on physical health of others
Effect on mental health of others
Subjective burden on the family
*P<0.05, **P<0.01, ***P<0.001
GROUPS
Psychosis
Epilepsy
(n-30)
(n-30)
Mean ± SD
Mean ± SD
22.23±2.20
30.63±6.41
8.73±3.05
8.60±3.53
8.56±0.93
7.06±2.18
5.93±1.17
4.93±2.11
7.80±2.18
5.06±1.98
0.80±0.76
1.00±0.58
3.20±0.61
1.60±0.56
1.73±0.44
1.66±0.47
t
df
-6.783
.156
3.463
2.264
5.072
-1.140
10.553
0.555
58
58
58
58
58
58
58
58
p
.000**
.422
.001**
.027*
.000***
.259
.000***
.581
Table- 3.1 Relationship of socio demographic variables between social support and family burden in early
onset Psychosis
Variables
Age of onset
Duration
Age of
caregivers
Education of
caregivers
Domains of Family Burden Interview Schedule11
Routine
Family
Family
Physical Mental
family
leisure
interaction
health of health of
activities
others
others
Socia
l
suppo
rt
-.003
.359
-.217
Financial
.243
-.260*
-.038
.093
.000
.207
-.038
000
-.280
.174
.109
-.475**
.275
-.260*
-.036
-.028
.130
.129
-.155
.000
.309
.190
-.391*
-.206
-.087
-196
.116
-.027
-.498**
*P<0.05, **P<0.001
Subjective
burden
Table-3.2 Relationship of socio demographic variables between social support and family burden in early
onset Epilepsy
Variables
Social
support
Age of onset
Duration
Age of caregivers
Education of
caregivers
-.034
.135
.061
.102
Financial
-.501**
.046
.694**
.103
Domains of Family Burden Interview Schedule11
Routine
Family
Family
Physical
Mental
family
leisure
interaction
health of
health of
activities
others
others
-.198
-.145
-.156
.000
.100
-.058
-.195*
-.043
-.106
-.192*
.164
.192
-.294
-.282
.067
.547**
-.180
.433*
.274
-354
Subjective
burden
-.379*
-.274
.242
.056
*P<0.05, **P<0.001
Discussion:
The study was carried out on total 60 subjects
maintaining
[30 each caregivers of the early onset patients
initiating
with psychosis and epilepsy] who were being
members, enactment of optimal interaction
diagnosed by the consultant psychiatrists as
pattern within the family system and having
per the ICD-10-DCR8and ILAE criteria9.
unwarranted negative impact on their mental
Both the groups of caregivers were matched
health because of their child’s illness.
on various socio- demographic factors (age,
Perception of burden of care on the part of
sex, education and income of family). The
caregivers, especially parents does have very
purpose of the study was to assess the quality
significant longitudinal implication on the
of life and burden of care of the caregivers of
long term prognosis of these adolescents.
the adolescent patients with psychosis and
Providing long term care to adolescents with
epilepsy. In psychosis group only two
chronic psychiatric and neurological illnesses
disorders were included, i.e. schizophrenia
could become a tantalizing thing to key
and bipolar affective disorders with psychotic
relatives, which has often been found to be
symptoms [BPAD ‘mania’ or ‘depression’
source of agony to them. These caregivers
with psychotic symptoms]. In this study we
have to face the manifold pains like seeing
have found that caregivers of adolescents
their children in distress and apprehending
with psychosis do perceive higher burden in
unfriendly attitude from others in the form of
many areas than that of caregivers of
stigma. Due to those factors such families
adolescents with epilepsy. Caregivers of
often face family turmoil in the forms of
adolescents
faulty
with
psychosis
have
the
experience of being burdened in areas like
routine
leisure
family
family
activities
functions
activities,
for
and
family
under
achievements in many quarters. In this study
we have found caregivers of the adolescents
were selected from the dedicated ‘epilepsy
with psychosis have higher level of burden in
clinic’ of the Central Institute of Psychiatry,
many areas of burden measuring tool we have
where this study was carried out. This
used11. Family members with chronic mental
epilepsy clinic has been in operation since
patients
bipolar
last decade and instrumental in dispersing
disorder often reckon themselves to be in
therapeutic interventions as well as dispelling
unfortunate condition which in turn leads to
stigma and misconceptions about epilepsy in
develop burden of care and negative emotions
common people. And most of the adolescents
about their fate and daily responsibilities.
with epilepsy were old cases who have been
Few factors like having an uncertain course
taking treatment from this clinic for years.
of the disease, severity of symptoms, length
Whereas in psychosis, many of the cases
of time in hospitals for treatment, number of
were ‘first timers’ in the institute and many
hospitalization,
e.g.
schizophrenia
behavior
of
caregivers did not have adequate information
predominance
of
about psychoses (schizophrenia and bipolar
negative symptoms, lack of external support
disorder) and their treatment. Apart from that
from other than core family members, lack of
many adolescents with psychosis did have
reciprocity in relations with the patient,
marked in capabilities in various aspects of
having a perpetual sense of grief due to loss
life functions. We have also seen that
of abilities and prospects of patients, and
caregivers of the adolescents with psychosis
apprehension of unpredictable mood swings
do receive significantly lesser support from
and violent behavior of patients have been
their respective social network and this factor
identified as potential factors for generating
might have some influence in causing burden
burden of care in family members of chronic
of care in them. This finding is consistent
psychiatric patients12-14. Where as in epilepsy
with Webb et al and Magliano et al studies15,
we have seen lesser burden to caregivers. It
16.
patients,
disturbing
and
loneliness,
might be due to few factors like increased
In present study significant negative
awareness about neurological origin of
correlation was found between age of
epilepsy in people, feeling of lesser stigma
caregivers and impact of family interaction
among caregivers, presence of higher level of
area of burden of care measuring scale11 in
functionality of patients, and above all
psychosis group. It means higher the age of
epileptic adolescents and their caregivers
caregivers lower the level of burden of care.
It could be explained as older caregivers have
disorder and this view of them would likely
more maturity and experience in handling the
to cause higher burden to them. Another
family interaction that is affected by the
explanation can be educated caregivers are
illness of patient. This finding is also in
usually engaged in more skilled jobs which
consonance with the observations being made
demand more involvement and due to this
in earlier studies15, 17. Education of caregiver
they cannot focus on core family affairs and
showed significant negative correlation with
ultimately those areas become “Achilles’
two areas of burden, e.g. subjective burden
Heel”
and financial burden. It might be because of
correlation was observed between duration of
educated caregivers could understand the
illness and impact on mental health of
actual nature of illness of patient, their
caregivers and duration of illness and family
awareness in more efficient manner than less
leisure. In can be explained that caregivers
or uneducated caregivers. At the same time
who have adolescents with longer illness
educated caregivers can solve the financial
history get themselves adapted with the
problems more skillfully than uneducated or
situation and devise suitable plans in
lesser educated caregivers since educated
accordance with the demands of the situation.
caregivers are employed in jobs which are
These people might as well have higher skills
more lucrative or profitable in terms of
to compartmentalize things, i.e. keeping
remunerations
less
patient care and fulfillment of greater family
educated caregivers. From these findings we
needs separate. In case of early onset
could say that education can have a
psychosis group it was observed that longer
moderating effect on caregivers’ burden.
the duration of illness lesser the level of
Whereas in early onset epilepsy significant
financial burden and lesser impact on the
positive correlations were observed between
physical
education and routine family activities and
Explanation of this occurrence could be in the
education and family interactions. It means
long run family members tend to become
higher education to caregivers would increase
more adaptive and skillful to get along with
burden in those two areas. It can be explained
the situation as well as managing funds for
as in epilepsy educated caregivers might not
patient care.
than
uneducated
or
to
them.
health
Significant
of
family
negative
members.
give higher importance to these areas since
In present study in psychosis group
epilepsy is recognized as core neurological
age of onset could not emerge as potential
factor in influencing burden of care but
found between age of caregivers and financial
surprisingly reverse picture was seen in
burden. This finding can be explained as, with
epilepsy group where significant negative
the growing age caregivers become less able
correlations were there between age of onset
to deliver care to their ailing children since
and financial burden and subjective burden. It
they themselves tend to become dependent on
means earlier the age of onset higher the
others to fulfill their own needs, so taking the
financial and subjective burden. Caregivers
responsibility of their ill children becomes a
have harrowing experiences if their children
burdensome job to them.
are detected with epilepsy in earlier phase of
life and they find themselves at loss if their
Conclusion:
children are advised to undergo long term
This study would be useful to enlighten us
treatment. In many cases caregivers are found
about
to be terribly upset when their child is
adolescents with psychosis and epilepsy.
diagnosed with epilepsy, chiefly because of
Caregiving holds a key position in the
anticipating stigma from others. Apart from
treatment and rehabilitation of these patients.
that in many occasions early onset epilepsy
Success of treatments and rehabilitations are
can become more severe than adult forms and
largely depending on the caregiving. If
often require prolong treatment with multiple
caregiving is found to be inadequate or
drugs18. Due to this factor family with such
improperly
patients
intervention would likely to be doubtful. This
often
has
to
face
financial
difficulties.
In epilepsy group, there is significant
negative correlation was found between age
of onset of illness and subjective burden and
financial burden. Many studies reported poor
prognosis with early age of onset and good
prognosis with adult age of onset. This
finding gives indication that better recovery
decrease financial burden; as well as this
findings equally implies upon the subjective
burden. Significant positive correlation was
various
facets
done
then
of
caregiving
success
of
of
the
study was carried out on small samples so in
future such kind of study can be done on large
samples in order to get more generalized
conclusion in this regard.
Acknowledgement:
Authors of this study are deeply indebted to
the Administration of the Central Institute of
Psychiatry, Ranchi, Jharkhand, India for
allowing them to use their infrastructure and
clientele for the purpose of the study. Authors
would also like to express their gratitude to all
the patients and their caregivers who had been
selected in the study.
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---------------------*Corresponding Author
Junior Psychiatric Social Worker,
Department of Psychiatric Social Work,
Central Institute of Psychiatry, Kanke,
Ranchi-834006, State- Jharkhand, India
E-Mail: narendrapsw@gmail.com
Tel: +91-98351-91942