Illness Perception of Schizophrenia among Schizophrenic Outpatients

Sri Novitayani

, Weena Chanchong

and Wandee Suttharangsee

Faculty of Nursing, Syiah Kuala University, Darussalam, Banda Aceh, 23111, Indonesia

Faculty of Nursing, Prince of Songkla University, Hatyai, Songkhla, 90110, Thailand

Keywords: Cognitive Illness Representation, Schizophrenia

Abstract: Schizophrenia as a chronic illness requires continuous treatment to prevent severe symptoms. The

schizophrenic patients must have appropriate coping in order to continuously follow the treatment that

determined by the medical team. Cognitive illness representation has a role in determining coping that is

chosen to deal with problems. It consists of identity, cause, timeline, consequences, and controllability

dimensions. Schizophrenic outpatients in this study had good identity because they labeled their symptoms

as a part of schizophrenia. However, majority of them had less perceived on schizophrenia as chronic and

cycle illness, negative consequences of schizophrenia, and treatment controlling schizophrenia. Majority of

them also had perceived that schizophrenia was caused by several causes. Temptation from AllAh SWT and

followed by stress or worry were the most patient’s perception as causes of schizophrenia. Overall

participant has experienced rehospitalization because of medication non-adherent. Therefore, we conclude

that cognitive illness representation may contribute to the behavior of taking medication as a coping strategy

in dealing schizophrenia. According to this, the researchers suggest that nurse should examine the

schizophrenic patient’s cognitive illness representation in order to know their views of schizophrenia, so the

nurse can predict the behavior that they will use to overcome the problem.

1 INTRODUCTION

Schizophrenia is a serious psychiatric disorder. It

causes disorganized and bizarre thoughts, emotion

behavior and perceptions which is manifested by

hallucination and delusion (Videbeck, 2011).

Individuals suffer schizophrenia while they have

psychotic symptom for at least six months

continuously, which is not related to health problems

or substance abuse, and seriously disrupt social and

occupational functioning (O’Brien et al., 2013). The

symptoms will get worse if patient doesn’t follow

treatment to deal schizophrenia. Therefore, the

patient has the appropriate coping strategies to

overcome problem because of schizophrenia.

Determining coping strategies that will be used

by individuals to cope the illness is influenced by the

individual’s perception of the illness (Tiemensma et

al., 2016). Poorer illness perceptions that individual

has are associated with increased involvement

maladaptive coping (Knowles, Cook, & Tribbick,

2013). Lobban et al. (2004) found that different

illness perceptions about schizophrenia including

identity, cause, timeline, consequences and

controllability dimension lead different behavioral as

coping strategies in order cope the problem (Lobban

et al., 2004). Those are suitable with framework of

Common Sense Model (CSM) that was developed

by Leventhal et. al. (1980).

The CSM illustrates how an individual takes

action in order to againts the threat of his/ her illness

(Kucukarslan, 2016). The framework of CSM

showed that individual’s behavior as coping that

used to overcome the problem of illness related to

individual’s perception about the illness (Leventhal

et al. 1980). The individual’s illness perception

could be changed anytime.

There is some coping strategies that should be

taken by schizophrenic patients to deal

schizophrenia. Adherence to medication is main

coping for schizophrenic patients in order to

manage their symptoms. Nicolino et al. (2011) found

that individual perceived about susceptibility of

illness, severity of illness, barrier of medication, and

benefit of medication can influence medication

adherence of schizophrenic patient. Study by Al-

Yahya and Fayad (2013) also found that

schizophrenic patients did not take their medication

242

Novitayani, S., Chanchong, W. and Suttharangsee, W.

Illness Perception of Schizophrenia among Schizophrenic Outpatients.

DOI: 10.5220/0008397000002442

In Proceedings of the Aceh International Nursing Conference (AINC 2018), pages 242-249

ISBN: 978-989-758-413-8

continously because they had lack insight about thier

illness, such as perceived that they have an organic

disorder or did not have psychological disorder

eventhought they have positive symptoms. So, the

wayof individual’s perception about their illness

influence their coping to deal the illness. A literature

review about medication adherence of schizophrenic

patients also found that medication adherence was

influenced by patient’s perception of illness

(Novitayani & Suttharangsee, 2012).

Medication adherence causes relaps in which

symptom may become severe. Literature review by

Emsley et al. (2013) found that high rate of relaps

occurs because of non-adherence in taking

medication after first period. Schizophrenic patients

who did not adhere to medication have risk 8 times

experiencing relapse compared to the patients who

adhered to medication (Maharani & Hardisal, 2016).

Usually, schizophrenic patients should be admitted

to psychiatric hospital when they get relapse or have

severe symptoms. Based on study by Pratama et al.

(2015), 50% of schizophrenic patients in Psychiatric

Hospital Aceh who come to polyclinic have relapse

and 62,5% of the patients did not adhere to

medication.

Based on all above, researchers are interested to

identify the illness perception of schizophrenic

outpatients who have experienced rehospitalization.

The researchers conducted this study in Psychiatric

Hospital Aceh.

2 COMMON SENSE MODEL

The Common Sense Model is a framework of the

way to provide behavior as coping in dealing with

problems due to the illness. Leventhal et al. (1980)

developed Common Sense Model (CSM) that

consists of illness representation, coping and

appraisal. Initially, individual will provide illness

representation, cognitive and emotional illness

representations, based on information. Those illness

representations affect the coping strategies of

individuals with purpose to overcome the problem

regarding to the illness. Coping strategies will be set

up through behavior. Lastly, individuals evaluate

their coping if the coping is effective or not in facing

the problem because of the illness.

This study identifies cognitive illness

representation as part of illness representation. It

considered as a lay individual’s framework of

thoughts or belief about illness. Cognitive illness

representation consists of five dimensions including

identity, cause, timeline, consequences, and

controllability dimensions (Leventhal et al., 1980).

Identity refers to statements regarding belief about

the illness, label, and knowledge about its

symptoms. Cause refers to beliefs regarding the

factors that are responsible for causing the illness.

Timeline refers to belief about the course of the

illness (such as chronic, acute, etc.) and the time

scale of the illness symptoms (such as persistence,

temporary, etc.). Consequences refer to belief

regarding the impact of the illness on quality of life

of functional capacity. Controllability refers to belief

about the efficacy of treatment and personal coping

that may alter the illness.

Cognitive illness representation associated with a

danger control process (Leventhal et al., 1980). The

danger control process refers to how the individuals

perceived the threat of their illness and what they do

to overcome the illness.

3 METHODS

This study is descriptive design that conducted in

Aceh, Indonesia. The study aims to examine illness

perceptions, especially cognitive illness

representation, among schizophrenic outpatients

who come to the polyclinic in Aceh Psychiatric

Hospital. There are some objectives in this study as

following:

1. To identify illness perceptions of schizophrenic

outpatient on identity dimension

2. To identify illness perception of schizophrenic

outpatient on cause dimension

3. To identify illness perception of schizophrenic

outpatient on timeline dimension

4. To identify illness perception of schizophrenic

outpatient on consequences dimension

5. To identify illness perception of schizophrenic

outpatient on controllability dimension

2.1 Inclusion Criteria

Forty participants who participated in this study

were schizophrenic outpatients from polyclinic of

Aceh Psychiatric Hospital, Indonesia. The inclusion

criteria consist of suffering schizophrenia that is

diagnosed by the psychiatrists at the Aceh

Psychiatric Hospital, aged between 18 to 60 years

old, having hospitalization at least twice since

diagnosis, scoring of the Brief Psychiatric Rating

Scale (BPRS) less than 41, good communication,

and willing to participate in this study.

Illness Perception of Schizophrenia among Schizophrenic Outpatients

243

2.2 Instruments

Three instruments were used in this study. There are

the Brief Psychiatric Rating Scale (BPRS), the

Demographic Data Questionnaire (DDQ), and the

Cognitive Illness Representation Questionnaire for

Schizophrenia (CIRQS).

2.2.1 The Brief Psychiatric Rating Scale

(BPRS)

The BPRS was as screening tool to screen potential

patient in this study through assessing both their

positive and negative symptoms such as anxiety,

depression, hallucinations, suspiciousness, and other

unusual behavior. The BPRS was developed by

Overall and Gorham (Leucht, et al., 2005). The

BPRS has 18 items to assess psychiatric symptoms

with Likert scale from 1 (no present) to 7 (extremely

severe).

The BPRS divided into seven categories

involving normal (score 18), borderline ill (score 19-

30), mildly ill (score 31-40), moderately ill (score

41-52), markedly ill (Score 53-64), severely ill

(score 65-83), and extremely ill (score 84-126)

(Leucht, et al., 2005). In this study, the researcher

used BPRS score less that 41 which is consider as

normal (score 18), borderline ill (score 19-30) and

mildly ill (score 31-40) to recruit participants.

2.2.2 The Demographic Data Questionnaire

(DDQ)

The DDQ was developed by researchers with

purpose to measure demographic data. It consists of

age, gender, education level, occupation, monthly

income, number of hospitalization, and length of

illness.

2.2.3 The Cognitive Illness Representation

Questionnaire for Schizophrenia

(CIRQS)

The CIRQS was used to assess cognitive illness

representation of mental health problem for

schizophrenic patients. The CIRQS was modified

from the IPQS that was developed by Lobban,

Barrowclough, and Steven (Lobban, Barrowclough,

& Jones, 2005). The CIRQS has five dimensions

including identity, cause, timeline, consequences,

and controllability dimensions. The format of the

CIRQS is a combination between dichotomous and

the Likert scale.

The identity dimension has several lists of

negative and positive symptoms. The item statement

of symptoms are scored from 0 to 1 (dichotomous)

with yes = 1 and no = 0 for having had symptoms

since the mental health problem occurred and scored

1 for each symptom if the subjects gave an answer in

the part of mental health problem. Cause, timeline

that consists of acute/chronic and cycle sub

dimensions, consequences, and controllability

dimensions had positive and negative statements

(21, 8, 9, and 4) with a 5-point Likert scale.

2.3 Validity and Reliability of The

Instruments

The content validity of the instruments were

evaluated by three experts including two lectures

from the Faculty of Nursing in Prince of Songkla

University and a lecture from the Faculty of Nursing

in Indonesia University. The researchers revised the

instruments based on suggestions from three experts.

The CIRQS had a good content validity index

(0.89).

The reliability of the CIRSQ, except symptoms,

was testes for internal consistency by using

Cronbach’s alpha coefficient. The CIRSQ was

accepted because the reliability value of Conbach’s

alpha coefficient was 0.81. For the symptoms, one

part of the identity dimension of CIRSQ, the

reliability was tested to examine inter-rater

agreement by using Kappa coefficient and the value

was 0.69. The kappa value of 0.69 was in substantial

agreement range between the first test and second

test (test-retest) (Landis & Koch, 1977 as cited in

Sim & Wright, 2005). The symptoms questionnaire

was accepted, because the reliability value of the

Kappa coefficient was greater than 0.4 (Sim &

Wright, 2005).

4 RESULTS

Descriptive statistic, especially frequencies and

percentages was used to analyze the data in this

study. Score of the BPRS among patients in this

study was in range 18 -30. All of the results in this

study will be explained more in detail as following.

4.1 Demographic Data

The results showed that majority of participants

were male (65%), age in adult category (95%),

senior high school (42.5%), and rehospitalization

from 2 until 5 times (70%). Mostly participants have

length of illness from 11 to 15 years (45%), and

occupation (87.5%).

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Table 1: Frequency and percentage of the participants by demographic data.

Characteristic N %

Age

Mildly Adult (18 – 25 years old) 2 5

Adult (26 – 65 years old) 28 95

Gender

Male 26 65

Female 14 35

Educational level

No formal education 1 2.5

Elementary school 5 12.5

Junior high school 9 22.5

Senior high school 17 42.5

University 6 15

Others 1 2.5

Occupation

Yes 25 62.5

No 15 37.5

Monthly income (IDR)

No income 15 37.5

300,000 – 1,000,000 17 42.5

> 1,000,000 8 20

Rehospitalization

2 – 5 times 28 70

6 – 10 times 8 20

11 – 15 times 4 10

Length of illness

1 – 5 years 3 7.5

6 – 10 years 7 17.5

11 – 15 years 18 45

16 – 20 years 6 15

21 – 25 years 4 10

31 – 35 years 1 2.5

41 – 45 years 1 2.5

Table 2: Frequency and percentage of the participants by identity level.

Identity level (proportion score) n %

Low identity (0 – 0.33) 2 5.0

Moderate identity (0.34 – 0.67) 5 12.5

High identity (0.68 – 1) 33 82.5

Table 3: Frequency and percentage of the participants by cause dimension.

Causes of schizophrenia n %

Stress or worry 27 67.50

A gem or virus 4 10.00

Chance or bad luck 11 27.50

Allah SWT 29 72.50

Family problems 23 57.50

Alcohol 6 15.00

My Personality 12 30.00

Death of a loved one 7 17.50

Thinking about things too much 26 65.00

Being bullied by others 15 37.50

Hereditary; it runs in my family 7 17.50

Poor medical care in my past 15 37.50

Illness Perception of Schizophrenia among Schizophrenic Outpatients

245

Causes of schizophrenia n %

My own behavior 13 32.50

Money worries 23 57.50

Overwork 8 20.00

Taking illicit drugs 7 17.50

Brain damage or abnormality 8 20.00

Chemical imbalance in the brain 5 12.50

My mental attitude, for example, thinking about life negatively 9 22.50

A trauma; something disturbing or shocking that happened in my life 15 37.50

Black magic 14 35.00

Table 4: Frequency and percentage of the participants by chronic sub-dimension, cycle sub-dimension, consequences

dimension, and controllability dimension.

Categories n %

chronic sub-dimension

Strongly perceived 6 15

Less perceived 30 75

No perceived 4 10

cycle sub-dimension

Strongly perceived 9 22.5

Less perceived 25 62.5

No perceived 6 15

consequences dimension.

Strongly perceived 13 32.5

Less perceived 25 62.5

No perceived 2 5

controllability dimension

Strongly perceived 17 42.5

Less perceived 23 57.5

No perceived 0 00.0

4.2 Cognitive Illness Representation

4.2.1 Identity Dimension

Most of participants had high identity level (82.5%).

High identity has similar meaning with good

identity. It means the participants can identify their

all symptoms as part of mental illness or

schizophrenia.

In this study, majority schizophrenic patients had

perceived the symptoms that they experienced were

part of the condition as well as schizophrenia. The

previous study by Lobban, Barrowclough, & Jones

(2004) showed that the symptoms that were suffered

by schizophrenic were identified as a mental health

problem.

The result of the current study in table 2 could be

happen because majority schizophrenic patients had

suffered schizophrenia more than five years and

rehospitalized to psychiatric hospital, so they were

aware and more understand about their symptoms

related to mental illness. A qualitative study by

Guner (2014) also found that schizophrenic patients

can define their symptom and they were aware that

they experienced the symptoms as part of

schizophrenia.

The gender may influence this result. Ward and

Besson (2012) reported that overall patients with

mental health problem that all of them are men

labeled the symptoms as mental health problem. In

this study, majority of participants were men.

While the schizophrenic patients belief that their

symptoms is attributed to mental health problem or

schizophrenia, they could be decided to take

medication as doctor prescribed in order to reduce

the symptoms. According to literature by Lobban et

al. (2003), patient with mental illness were more

likely to take medication adherence while they had

labeled that their mental illness as viewed from their

symptoms is a mental illness.

4.2.2 Cause Dimension

According to CIRQS, there were 21 causes of

schizophrenia. The result showed that majority

participants perceived temptation from Allah SWT

(72.5%), and stress or worry (67.5%) as causes of

their mental health problem, schizophrenia. All of

participants had perceived cause of schizophrenia

more than one.

The exactly cause of schizophrenia is unknown

until now. However, there is some cause that may

affect someone suffering schizophrenia (University

of Maryland Medical Center [UMMC], 2011). In

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this study, each participant had perceived more than

one the cause of mental health problem or

schizophrenia. In the first rank, participants had

perceived temptation or test from Allah SWT as

cause of their mental health problem or

schizophrenia. It can be happen because of all

participants are Muslim. The Islamic view of the

disease is a test or temptation given by Allah SWT

and if we are patient in facing it, our previous sins

will be erased. In Surah Al Baqarah (155), Allah

SWT says that we will indeed give you test, with

little fear, hunger, lack of wealth, soul and fruits.

This is also supported by the words of the prophet

Muhammad SAW that a Muslim is struck by an

unpleasant, sick or other thing, and Allah SWT will

erase his mistakes, and his sin will fall as leaves falls

down from the tree (Muttafaq’alaih Hadist). In

Islamic psychology, Islam views personality as a

unity of body and mind aspects, so individual seek

answers to each question through the mind by using

their energy and abilities in the physical world in a

constructive way and satisfied with the answer they

find because it is based on the word of Allah SWT

(All of Surah in Al-Qur’an), philosophy and science

(Ashy, 1999). Therefore, participants feel confident

to belief that Schizophrenia or mental health

problem is the will from Allah SWT as a test.

The second rank is stress or worry. Another

study by Hussain and colleagues (2017) found that

most of schizophrenic patients strongly belief on

stress or worry, family problems, lack of friends or

people who care me, thinking about thing too much,

money worries and lack of sleep as cause of mental

health problem. Stress that is experienced by

individual in crisis situation in their life is a critical

factor in development of brain dysfunction against

psychotic susceptibility (Green et al., 2014). Stress

increases neurotransmitter of dopamine (Fortinash &

Worret, 2004) that causes the appearance of

psychotic symptoms which indicate schizophrenia

(Videbeck, 2011).

4.2.3 Timeline Dimension

Timeline dimension consist of chronic and cycle

sub- dimensions. Based on table 4, the result showed

that majority respondents had less perceived of

mental health problem or schizophrenia as a chronic

illness (75%).

The same result also found in cycle sub-

dimension like showed in table 4. Majority

respondents had less perceived of mental health

problem or schizophrenia as a cycle illness (62.5%).

Based on the results, most of the participants had

less perceived that schizophrenia is a chronic and

cycle illness. It means the participants belief that

schizophrenia would last for short time. Another

study also showed the same result that the

schizophrenic patients were less belief on

schizophrenia as chronic and cycle illness (Wall et

al., 2017). Hussain and colleagues (2017) found that

general schizophrenic patients were unsure about

mental health problem as chronic and cycle illness.

Based on study in Turki, even though some

schizophrenic patients had perceived schizophrenia

as chronic illness, most of the patients did not

exactly understand about the course of schizophrenia

(Guner, 2014). In most cases, mental illness is

viewed as an acute illness that it will occur in

particular situation like after individual experiences

stressful of their life events (Petrie et al., 2008).

The way of schizophrenic patients’ beliefs about

the course of schizophrenia will influence their

behavior to face the health problem from

schizophrenia, such as taking medication. The

previous study found that perceiving an illness

condition as chronic was significantly associated

with medication adherence (Aflakseir, 2013).

4.2.1 Consequences Dimension

The result in table 4 showed that majority

participants had less perceived of negative

consequences of the mental health problem or

schizophrenia (62.5%).

The consequences dimension involves beliefs

about negative impact of mental health problem on

the individual’s personal life, financial, and

relationship with others (such as family, social). The

participants perceived that mental health problem or

schizophrenia had negative consequences in to their

life process, however, most of them still had less

perceived on negative consequences of its.

Similar result also found in study by Wall and

colleagues (2017). In that study, schizophrenic

patients adopted that schizophrenia has less negative

consequences on physical, social and psychological

functioning. Schizophrenic patients in Mexican

believed that the schizophrenia affect their life, but

the study did not explore more about kind of

consequences that changed their life because of

their mental health problem (Gomez-de-Regil,

2015). In the other hand, study by Hussain et al.

(2017) is not only reported schizophrenic patients’

beliefs about negative consequences because of

mental health problem, but also defined in detail

kind of consequences that they experienced (such as

Illness Perception of Schizophrenia among Schizophrenic Outpatients

247

their daily activity, money, and relationship) based

on the contain of the questionnaire used in that

study.

In the present study, some participants had no

income because they did not have occupation

(37.5%). The rest of participants had occupation;

however, their income is insufficient to meet their

own needs (table 1). Thus, the data of monthly

income in table 1 supported the negative

consequences on financial problem in consequences

dimension (statement no. 1 “I do not have any job

because of my mental health problems” and

statement no. 3 “My mental health problems have

financial consequences for me”).

The severe symptoms make schizophrenic

patients difficult to maintain their function and

relationship with other as negative consequences

(Nicolino et al., 2011). Therefore, we can conclude

that schizophrenic patient’s perception about

consequences focus on the patient’s condition when

the patient has severe symptoms.

4.2.1 Controllability Dimension

According to table 4, there were slightly different

percentage perception of schizophrenic patients

between less perceived and strongly perceived on

the effectiveness of treatment in order to manage the

symptoms of mental health problem. The result

showed that 57.5% of participants had less perceive

of positive perception about controllability followed

by strongly perceived (42.5%).

Controllability dimension explores patients’

beliefs about how medication controlling the

symptoms and preventing negative consequences

that figures in the questionnaire. Generally,

schizophrenic patients consider that the treatment is

helpful to their illness (Gomez-de-Regil, 2015).

However, schizophrenic patients were unsure about

if treatment can overcome the mental health

problems (Hussain et al., 2017). Other study

reported that schizophrenic patient’s perception

about the efficacy of treatment was having some

control on their schizophrenic symptoms (Lobban, et

al., 2004).

While schizophrenic patients had strongly

perceived on the efficacy of medication in managing

symptoms of schizophrenia, the patients will adhere

to medication and follow rehabilitation program as

continuously based on team medical prescribed

(Petrie, et al., 2008). So, it is important to

schizophrenic patients strongly believe on efficacy

of treatment in controlling their severe symptoms to

be stable condition. Other than that, the patients

should be able to control the side effects from the

medication that they take. Therefore, they will

continuously take medication as prescribed.

5 CONCLUSIONS

Coping strategy that individual’s used has

influenced by individual‘s illness perception,

specifically cognitive illness representation. In this

study, overall all of participants had experienced

rehospitalization more than two times because they

did not take medication as prescribe. This may be

influenced by their illness perception about

schizophrenia. Most participants had less perceived

that the treatment could not manage the symptoms

so that they did not take medication regularly as

prescribed. Moreover, most participants also had

less perceived on negative consequences in their

personal life, financial, and relationship with other

caused by schizophrenia. So, they may feel that it is

not important to treat schizophrenia through taking

medication continuously. Then, most participants

had less perceived on schizophrenia as a long-term

illness, so they may take medication only when they

experience symptoms or the symptoms getting

worse. Furthermore, they also had perceived that

schizophrenia is caused by multiple factors and

almost all of them able to identify the symptoms as a

part of schizophrenia. Therefore, it is important to

examine patient’s illness perception in order to

predict their coping that they used to face the illness.

If their illness perception has gaps, misperception or

confusion with the concept of schizophrenia, their

coping will not suitable to overcome the problem of

schizophenia. In this situation, the nurse can provide

intervention that can change the patient’s illness

perception in accordance with the concept of

schizophrenia.

ACKNOWLEDGEMENTS

We would like to express sincere gratitude and deep

appreciation to the people who have contributed

throughout this study. A specially thank to Director

of the Aceh Psychiatric Hospital, Aceh Province,

Indonesia, who allowed this study to be undertaken

in the hospital. Moreover, acknowledge also giving

to the schizophrenic patients who participated in this

study.

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248

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