MENTAL HEALTH, DISEASE AWARENESS,

COPING AND ADJUSTMENT IN CAREGIVERS OF

SCHIZOPHRENIC PATIENTS

SUMMARY
Submitted to the

University of Rajasthan
for the Degree of

DOCTOR OF PHILOSOPHY
IN
PSYCHOLOGY

Supervisor: Submitted by:

Dr. Mukta Singhvi Priyanka Bhatia
Associate Professor,
Department of Psychology,
University of Rajasthan,
Jaipur (Raj.)

DEPARTMENT OF PSYCHOLOGY
UNIVERSITY OF RAJASTHAN
JAIPUR- 302004 (INDIA)

2014

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 TITLE :
MENTAL HEALTH, DISEASE-AWARENESS, COPING AND
ADJUSTMENT IN CAREGIVERS OF SCHIZOPHRENIC
PATIENTS

(A) INTRODUCTION

Definition of Schizophrenia-

Schizophrenia is a psychotic disorder (or group of disorders) marked by severely

impaired thinking, emotions, and behaviors. The term schizophrenia comes from two
Greek words that mean "split mind." It was coined around 1908 by a Swiss doctor
named Eugen Bleuler to describe the splitting apart of mental functions that he
regarded as the central characteristic of schizophrenia.

Schizophrenic patients are typically unable to sort sensory stimuli and may have
enhanced perceptions of sounds, colors, and other features of their environment. Most
schizophrenics, if untreated, gradually withdraw from interactions with other people,
and lose their ability to take care of personal needs and grooming.

The course of schizophrenia in adults can be divided into three phases or stages.

 In the acute phase, the patient has an overt loss of contact with reality
(psychotic episode) that requires intervention and treatment.

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  In the second or stabilization phase, the initial psychotic symptoms have
been brought under control but the patient is at risk for relapse if treatment
is interrupted.
 In the third or maintenance phase, the patient is relatively stable and can be
kept indefinitely on antipsychotic medications.
Schizophrenia may develop so gradually that the family and even the person with the
disease may not realize that anything is wrong for a long period of time. This slow
deterioration is referred to as gradual-onset or insidious schizophrenia. A gradual
build-up of symptoms may or may not lead to an acute or crisis episode of
schizophrenia. An acute episode is short and intense, and involves hallucinations,
delusions, thought disorder and an altered sense of self.
Sometimes schizophrenia has a rapid or sudden onset. Very dramatic changes in
behaviour occur in few weeks or even in the few days. Sudden onset usually leads
fairly quickly to an acute episode. Some people have a very few such attacks in a
lifetime: others have more. Some people lead relatively normal lives between
episodes, others find themselves are very listless depressed, and unable to function
well.

Recently, some psychiatrists have begun to use a classification of schizophrenia

based on two main types. People with Type I, or positive schizophrenia, have a rapid
(acute) onset of symptoms and tend to respond well to drugs. They also tend to suffer
more from the positive symptoms, such as delusions and hallucinations. People with
Type II, or negative schizophrenia, are usually described as poorly adjusted before
their schizophrenia slowly overtakes them. They have predominantly negative
symptoms, such as withdrawal from others and a slowing of mental and physical
reactions (psychomotor retardation).

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Diagnosis
Diagnosis is based on the self-reported experiences of the person, and abnormalities
in behavior reported by family members, friends or co-workers, followed by a clinical
assessment by a psychiatrist, social worker, clinical psychologist or other mental
health professional. Assessment includes a psychiatric history and some form
of mental status examination

Standardized criteria
The most widely used standardized criteria for diagnosing schizophrenia come from
the American Psychiatric Association's Diagnostic and Statistical Manual of Mental
Disorders, version DSM-IV-TR, and the World Health Organization's International
Statistical Classification of Diseases and Related Health Problems, the ICD-10.
According to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-
TR), to be diagnosed with schizophrenia, three diagnostic criteria must be met.

1. Characteristic symptoms: Two or more of the following, each present for

much of the time during a one-month period (or less, if symptoms remitted
with treatment).
 Delusions
 Hallucinations
 Disorganized speech, which is a manifestation of formal thought
disorder
 Grossly disorganized behavior (e.g. dressing inappropriately, crying
frequently) or catatonic behavior

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  Negative symptoms—affective flattening (lack or decline in emotional
response), alogia (lack or decline in speech), or avolition (lack or decline
in motivation)

2. Social/occupational dysfunction: For a significant portion of the time since

the onset of the disturbance, one or more major areas of functioning such as
work, interpersonal relations, or self-care, are markedly below the level
achieved prior to the onset.

3. Duration: Continuous signs of the disturbance persist for at least six months.
This six-month period must include at least one month of symptoms (or less, if
symptoms remitted with treatment).

Subtypes:

The DSM-IV-TR contains five sub-classifications of schizophrenia

Paranoid type
The key feature of this subtype of schizophrenia is the combination of false beliefs
(delusions) and hearing voices (auditory hallucinations), with more nearly normal
emotions and cognitive functioning. (Cognitive functions include reasoning,
judgment, and memory.) The delusions of paranoid schizophrenics usually involve
thoughts of being persecuted or harmed by others or exaggerated opinions of their
own importance, but may also reflect feelings of jealousy or excessive religiosity.
The delusions are typically organized into a coherent framework. Paranoid
schizophrenics function at a higher level than other subtypes, but are at risk for
suicidal or violent behavior under the influence of their delusions.

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Disorganized type
Disorganized schizophrenia (formerly called hebephrenic schizophrenia) is marked
by disorganized speech, thinking, and behavior on the patient's part, coupled with flat
or inappropriate emotional responses to a situation (affect). The patient may act silly
or withdraw socially to an extreme extent. Most patients in this category have weak
personality structures prior to their initial acute psychotic episode.

Catatonic type
Catatonic schizophrenia is characterized by disturbances of movement that may
include rigidity, stupor, agitation, bizarre posturing, and repetitive imitations of the
movements or speech of other people. These patients are at risk for malnutrition,
exhaustion, or self-injury. Catatonia as a symptom is most commonly associated with
mood disorders.

Undifferentiated type
Patients in this category have the characteristic positive and negative symptoms of
schizophrenia but do not meet the specific criteria for the paranoid, disorganized, or
catatonic subtypes.

Residual type
This category is used for patients who have had at least one acute schizophrenic
episode but do not presently have such strong positive psychotic symptoms as
delusions and hallucinations. They may have negative symptoms, such as withdrawal
from others, or mild forms of positive symptoms, which indicate that the disorder has
not completely resolved.

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Causes & symptoms
One of the reasons for the ongoing difficulty in classifying schizophrenic disorders is
incomplete understanding of their causes. It is thought that these disorders are the end
result of a combination of genetic, neurobiological, and environmental causes. A
leading neurobiological hypothesis looks at the connection between the disease and
excessive levels of dopamine, a chemical that transmits signals in the brain
(neurotransmitter). The genetic factor in schizophrenia has been underscored by
recent findings that first-degree biological relatives of schizophrenics are 10 times as
likely to develop the disorder as are members of the general population.

POSITIVE SYMPTOMS. The positive symptoms of schizophrenia are those that

represent an excessive or distorted version of normal functions. Positive symptoms
include disorganized thought processes (reflected mainly in speech) and disorganized
or catatonic behavior. Disorganized thought processes are marked by such
characteristics as looseness of associations, in which the patient rambles from topic to
topic in a disconnected way; tangentiality, which means that the patient gives
unrelated answers to questions; and word salad, in which the patient's speech is so
incoherent that it makes no grammatical or linguistic sense. Disorganized behavior
means that the patient has difficulty with any type of purposeful or goal-oriented
behavior, including personal self-care or preparing meals. Other forms of
disorganized behavior may include dressing in odd or inappropriate ways, sexual self-
stimulation in public or agitated shouting or cursing.

NEGATIVE SYMPTOMS. The DSM-IV definition of schizophrenia includes three

negative symptoms. They are called negative because they represent the lack or
absence of behaviors. The negative symptoms that are considered diagnostic of
schizophrenia are a lack of emotional response (affective flattening), poverty of

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speech, and absence of volition or will. In general, the negative symptoms are more
difficult for doctors to evaluate than the positive symptoms.

Treatment
The treatment of schizophrenia depends in part on the patient's stage or phase.
Patients in the acute phase are hospitalized in most cases, to prevent harm to the
patient or others and to begin treatment with antipsychotic medications. A patient
having a first psychotic episode should be given a CT or MRI scan to rule out
structural brain disease.

Family therapy is often recommended for the families of schizophrenic patients, to

relieve the feelings of guilt that they often have as well as to help them understand the
patient's disorder. The family's attitude and behaviors toward the patient are key
factors in minimizing relapses (for example, by reducing stress in the patient's life),
and family therapy can often strengthen the family's ability to cope with the stresses
caused by the schizophrenic's illness. Family therapy focused on communication
skills and problem-solving strategies is particularly helpful. In addition to formal
treatment, many families benefit from support groups and similar mutual help
organizations for relatives of schizophrenics.

Schizophrenia: Caregivers and Stigma

The stigma of schizophrenia is a barrier to those trying to rehabilitate themselves. It is

also a very real problem for their families. Therefore, those involved with
schizophrenia are concerned about dozens of misconceptions about the illness.
Schizophrenia is a disease that is not well understood and is greatly feared. People
confuse schizophrenia with split personality or multiple personality. They believe that

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people with schizophrenia are violent and dangerous. A limited number are, of
course, but media publicity about particularly frightening and bizarre crimes of
violence committed by people with mental disorders has left the public with the
impression that most persons with schizophrenia are violent. This is not true. The
majority are not. However, wide differences in the effect that schizophrenia has on
different people and the difficulty in understanding the actions of someone in a
deeply psychotic state, whose thinking is thoroughly confused, reinforce the public’s
concern. Many believe that schizophrenia is the result of bad parenting and childhood
trauma. Some religious groups hold the view that the illness is one of God’s
punishments.

Families often find the stigma difficult to handle. Some try to hide the illness in the
family. Others, however, prefer to speak openly about it. They say this gives peace of
mind and allows them to join with others to try to remove the stigma.

Caregivers
Caregivers are those people who act as support for someone with a disabling illness,
be it a spouse, parent, sibling, friend, work colleague or relative. Being a caregiver is
important because one not only provide love, care and support in the most difficult
moments of a loved one's life, but also give feedback, act as a reality check, motivate,
encourage and offer a window to a world of hope and normality.

Role of Caregiver
Caregivers have a vital role to play in assisting their friend or loved one who has been
diagnosed as suffering from schizophrenia. Scientific research has clearly
demonstrated that the involvement of a caregiver in treatment promotes the best
outcomes in schizophrenia.

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The treatment of schizophrenia involves a three-way relationship, between the
individual, the mental health professional and the caregiver. The individual with
schizophrenia, along with caregiver, share the same goals - to reduce the pain and
severity of symptoms, to reduce the risk of relapse and to promote the return of the
sufferer to a normal life-pattern.
As a caregiver there are a number of things that one can do to help their loved one.
 Becoming well informed about schizophrenia and its treatment.
 To remain supportive and to understand what the sufferer is going through, it is
important for the caregiver to become informed about schizophrenia and its
treatment as possible.
 Caregiver should learn to recognize the early warning signs of schizophrenia or
schizophrenic relapse
People experiencing the active phase of schizophrenia are usually unaware that
anything is wrong. In this situation, caregivers have an important role to be able to
recognize the individual's early warning signs - those signs that indicate
schizophrenia is relapsing and to seek appropriate assistance.

Some early warning signs that indicate the possibility of such relapse include:
 anxiety, depression or irritability;
 suspicion, hostility or fearfulness;
 difficulty sleeping or unusual waking hours;
 appetite changes;
 loss of energy, motivation and interest;
 concentration and/or memory problems;
 preoccupation with certain ideas (such as religion);

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  social withdrawal - not wanting to spend time with friends and family
members;
 mentioning odd or strange ideas;
 smiling for no apparent reason;
 difficulty meeting responsibilities such as work or study
 deteriorating self-care.

Caregivers are in the best position to provide the day-to-day encouragement and
support needed to stick with treatment. Caregivers can help the person they are caring
for in many ways including:
 Encouraging your loved one to stick with the treatment program
 Keeping track of appointments and getting the person to the appointments;
 Ensuring that medications are available and that medications are taken as
instructed;
 Being actively involved in treatment by working with the individual and the
mental health professional/s in making decisions about treatment and setting
goals to work towards
 Being interested and available to discuss how treatment is going; and
 Assisting with the access to resources and services such as government
benefits.

It is common for caregivers to feel guilty, either when their loved one is first
diagnosed with schizophrenia or when improvement isn't occurring as quickly as was
hoped for. They may agonize over past mistakes and events and wonder what should
or shouldn't have been done. Parents are particularly prone to these feelings.

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Caregivers have a very important role in healing process of the patient along with
health professionals. Supporting a person with a mental illness can be tiring work.
The role of caregiver is important, in order to provide the best support caregivers
must also look after their mental and physical health.

Schizophrenia is one of the chronic, severe and disabling brain disorders. The
schizophrenic disorders are a major social tragedy because of the large number of
persons affected and the severity of their impairment. A number of studies indicate
that about 1% of the world's population is affected by schizophrenia, without
regard to race, social class, level of education, or cultural influences. (However,
outcome may vary from culture to culture, depending on the familial support of the
patient.) Most patients are diagnosed in their late teens or early 20s, but the symptoms
of schizophrenia can emerge at any point in the life cycle. The male/female ratio in
adults is about 1.2:1. Males typically have their first acute episode in their late teens
or early 20s, while females are usually well into their 20s when diagnosed.

Schizophrenia is rarely diagnosed in preadolescent children, although patients as

young as five or six have been reported. Childhood schizophrenia is at the upper end
of the spectrum of severity and shows a greater gender disparity. It affects one or two
children in every 10,000; the male/female ratio is 2:1.

Schizophrenia is the fourth leading cause of disability in the developed world

(for ages 15-44), and Schizophrenia is observed worldwide. Lifetime prevalence
varies from 0.5% to 1.5%. The incidence of Schizophrenia is slightly higher in men
than women. Negative symptoms (e.g., social withdrawal, lack of motivation, flat
emotions) tend to predominate in men; whereas depressive episodes, paranoid
delusions, and hallucinations tend to predominate in women.

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Indian families have been typically described as often believing in causes like
supernatural forces and therefore seek help from magico-religious healers observe
Srinivasan & Thara (2001). This is particularly true of rural and semi-urban
populations in India and those hailing from an orthodox and very religious
background who throng religious centers of healing in search of a desperate cure for
mental illness.

Family conflict and family intimacy have been found to reflect the degree of burden
or reward experienced and it is suggested that the family system, as the context
within which the patient exists, be seen as the mediating environment for care giving
burden and reward (Heru, 2000).

Martens & Addington (2001), observe that family members are significantly
distressed as a result of having a family member with schizophrenia.

Schizophrenia is a severe mental illness, which is stressful not only for patients, but
also for family members. Providing care to family members dealing with chronic
illness may result in feelings of burden or strain for caregivers that can diminish their
quality of life (Sales, 2003).

Numerous studies have demonstrated that family caregivers of persons with a severe
mental illness suffer from significant stresses, experience moderately high levels of
burden, and often receive inadequate assistance from mental health professionals
(Saunders, 2003). Effective family functioning in families with schizophrenia may
be influenced by a variety of psychosocial factors (Saunders, 2003).

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Ivarsson et al. (2004) contend that family caregiver burden is complex and includes
several areas such as activities in daily life, worry and social strain.
One of the recent studies done at Kaohsiung Medical University, Kaohsiung
(2008), shows the burden of the primary family caregivers of schizophrenia patients
in Taiwan and the factors that affect caregiver burden.

(B) RATIONALE OF THE STUDY

Caregivers of psychotic patients has been studied exclusively in different cultures
around the world, there is a lack of researches on caregivers in India. There are
several crossectional studies in the literature that have investigated family burden and
quality of life in caregivers with schizophrenia but studies are woefully inadequate in
the Indian context. Considering all these in mind the present research was planned
and various factors that seem to play an important role in caregivers particularly in
Indian context shall be studied.

(C) AIMS AND OBJECTIVES

1. To determine the Mental Health of the caregiver (parent) of patients
experiencing schizophrenic symptoms for 12months.
2. To determine the Mental Health of the caregiver (parent) of patients
experiencing schizophrenic symptoms for more than 12months
3. To determine the Mental Health of the caregiver (spouse) of patients
experiencing schizophrenic symptoms for 12months.
4. To determine the Mental Health of the caregiver (spouse) of patients
experiencing schizophrenic symptoms for more than 12months.
5. To find out the Disease Awareness of the caregiver (parent) of patients
experiencing schizophrenic symptoms for 12months.

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 6. To find out the Disease Awareness of the caregiver (parent) of the patients
experiencing schizophrenic symptoms for more than 12months.
7. To find out the Disease Awareness of the caregiver (spouse) of the patients
experiencing schizophrenic symptoms for 12months.
8. To find out the Disease Awareness of the caregiver (spouse) of the patients
experiencing schizophrenic symptoms for more than 12months.
9. To understand the Coping level of the caregiver (parent) of patients
experiencing schizophrenic symptoms for 12months.
10. To understand the Coping level of the caregiver (parent) of the patients
experiencing schizophrenic symptoms for more than 12months.
11. To understand the Coping level of the caregiver (spouse) of the patients
experiencing schizophrenic symptoms for 12months.
12. To understand the Coping level of the caregiver (spouse) of the patients
experiencing schizophrenic symptoms for more than 12months.
13. To ascertain the level of Adjustment of the caregiver (parent) of patients
experiencing schizophrenic symptoms for 12months.
14. To ascertain the level of Adjustment of the caregiver (parent) of the patients
experiencing schizophrenic symptoms for more than 12months.
15. To ascertain the level of Adjustment of the caregiver (spouse) of the patients
experiencing schizophrenic symptoms for 12months
16. To ascertain the level of Adjustment of the caregiver (spouse) of the patients
experiencing schizophrenic symptoms for more than 12months.

(D) HYPOTHESES
1. There would be a significant difference between mental health of caregivers of
patients experiencing schizophrenic symptoms for 12 months and caregivers of
patients experiencing schizophrenic symptoms for more than 12 months.

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2. There would be a significant difference between the disease-awareness of
caregivers of patients experiencing schizophrenic symptoms for 12 months and
caregivers of patients experiencing schizophrenic symptoms for more than 12
months.
3. There would be a significant difference between the coping level of caregivers
of patients experiencing schizophrenic symptoms for 12 months and caregivers
of patients experiencing schizophrenic symptoms for more than 12 months.
4. There would be a significant difference between the adjustment level of
caregivers of patients experiencing schizophrenic symptoms for 12 months and
caregivers of patients experiencing schizophrenic symptoms for more than 12
months.
5. There would be a significant difference between the mental health of spouse
and parents.
6. There would be a significant difference between the disease awareness of
spouse and parents.
7. There would be a significant difference between the coping level of spouse and
parents.
8. There would be a significant difference between the adjustment level of spouse
and parents with the patient
9. There will be a significant interactive effect of duration of illness (12 months
and more than 12 months) and categories of caregivers (parents and spouse) on
mental health.
10.There will be a significant interactive effect of duration of illness (12 months
and more than 12 months) and categories of caregivers (parents and spouse) on
disease-awareness.

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 11.There will be a significant interactive effect of duration of illness (12 months
and more than 12 months) and categories of caregivers (parents and spouse) on
the level of coping.
12.There will be a significant interactive effect of duration of illness (12 months
and more than 12 months) and categories of caregivers (parents and spouse) on
the level of adjustment.

(E) SAMPLE
The study was conducted on 100 caregivers, selected from Mental Health Care &
Research Center, Jaipur.
The categorical division was as follows:

Caregivers of Schizophrenic patient (duration of illness about 12months)

Parents-25 Spouse-25
(Male/Female) (Male/Female)

Caregivers of Schizophrenic patient (duration of illness more than 12months)

Parents-25 Spouse-25
(Male/Female) (Male/Female)

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(F)RESEARCH DESIGN
2*2 Factorial Design

Duration of illness

About 12 months More than 12 months

Parents
(Male/Female) Mental Health,
Disease Awareness,
Categories of caregivers

Coping and
Spouse Adjustment Level
(Male/Female)

(G)ADMINISTRATION OF TESTS

The following measures were administered on the caregivers with informed consent
and they were duly assured that the results so obtained would be kept confidential and
would not be used for any other purpose extraneous to the present research:

1. Mental Health Inventory (Jagdish Singh and A. K. Srivastava, 1983)

2. Ways of Coping Questionnaire (Folkman & Lazarus, 1986)
3. The Adjustment Inventory (Hugh M. Bell)
4. Disease Awareness – Self reporting checklist

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(H)PROCEDURE

Testing sessions were conducted in the room setting with adequate facilities and
proper arrangements in clinical setup of Mental Health Care and Research Centre,
Jaipur, Rajasthan. The sample of 100 male / female caregivers was administered on
Mental Health Inventory (MHI), Ways of Coping Questionnaire, The Adjustment
Inventory and Disease-Awareness Checklist. Tests were randomly administered
along with detailed face to face interviews.

(I)STATISTICAL ANALYSIS

Mean, SD, t-test and ANOVA was used to analyze the data

(J)FINDINGS OF RESEARCH

 Caregivers Status and Duration of illness significantly affected the

approaching Positive Self-Evaluation, Parent are found to more anxious as

compared to Spouse group Caregivers

 Caregivers Status and Duration of illness significantly affected the

approaching Perception of Reality

 Caregivers Status are not affected by Autonomy dimension of Mental health

 Caregivers Status and Duration of illness strongly significantly affected the

approaching Group Oriented attitudes and Environmental Mastery

 It was observed that both the Caregivers Status and Duration of illness

significantly affected the approaching of Mental Health, out of the main

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 effects, both Parent and Spouse group of (Caregivers Status) exerted a

insignificant main effect (F was 1.047599, NS).

 The two groups (Caregivers Status and Duration of illness) significantly

affected the approaching Adjustment Dimensions. It may be seen that out of

the main effects, both Parent and Spouse group of (Caregivers Status) and

Duration of illness exerted a significant main effect.

 Coping Skills significantly affected the two groups, Caregivers Status

(Parents and Spouse) and Duration of illness (for 12 months and more than

12 months)

(K) PRACTICAL IMPLICATIONS

Most of the educated people who read newspapers, magazines and watch

scientific programs on T.V. are aware of Schizophrenia as a major mental

disorder, formerly known as insanity, because of the unusual, queer and

eccentric behaviour of the patient and because it appears out of this world.

Such patients are branded as 'mad' and are rebuked and ridiculed by uncultured

people. This pushes such unfortunate victims of severe mental disorder deeper

into the process of de-socialization, which later affects the patient's social

rehabilitation after treatment. It is therefore absolutely necessary for the

guardians of psychiatric patients and responsible people in general to know

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what really is meant by Schizophrenia. Is it incurable? Should such patients be

treated as outcasts, like 'lepers' who were ostracized in the last century or like

AIDS patients who are condemned these days! Family members of such mental

patients suffer not only from the patient's behaviour and the uphill task of

giving him regular treatment but also from the prejudiced community by way

of a near boycott.

This study addressed the problem of Caregivers mental health and well being

with a perspective to create awareness and provide preliminary information

about the symptoms of strain present in the sample.

Because there exists a lack of empirical research regarding caregivers well

being and disease awareness in India, this study was undertaken to fill the gap.

Little interest has been taken to examine directly the perceptions of their own

somatic status and chronic social , occupational and emotional adjustments and

coping skills.

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