PREDICTING FACTORS OF BURDEN AMONG FAMILY...

PREDICTING FACTORS OF BURDEN AMONG FAMILY CAREGIVERS OF

PATIENTS WITH SCHIZOPHRENIA IN SURABAYA, INDONESIA

FAIDA ANNISA

A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS

FOR THE MASTER DEGREE OF NURSING SCIENCE

(INTERNATIONAL PROGRAM)

FACULTY OF NURSING

BURAPHA UNIVERSITY

JULY 2015

COPYRIGHT OF BURAPHA UNIVERSITY

This master thesis has been supported by

the master and doctoral thesis support

grant from Burapha University,

Thailand, fiscal year 2015

iv

ACKNOWLEDGMENT

First and above all, I praise Allah SWT, Alhamdulillah, that granted me the

chance, health, strength, and capability to complete this study successfully. I am

grateful to the Government of the Republic of Indonesia, and the Kerta Cendekia

Nursing Academy for giving me the opportunity to study for the degree of Master of

Nursing Science in the Faculty of Nursing at Burapha University in Thailand.

I express my deep sincere thanks to my major advisor, Assistant Professor

Dr. Pornpat Hengudomsub for her thoughtful guidance, inspiration, and huge support

during the whole period of my study, and especially for her belief in me and her

meaningful knowledge during my thesis process. My sincere thanks also goes to my

co-advisor, Associate Professor Dr. Wannee Deoisres for her excellent advice and

detailed correction of my thesis. I would like to thank my examining committee,

Associate Professor Dr. Chintana Wacharasin for her warm encouragement, and Dr.

Wetid Pratoomsri (Psychiatrist) for their valuable comments to better my study,

especially my thesis.

I greatly appreciate the honored Associate Professor Dr. Nujjaree

Chaimongkol, all the lectures, and all the staff of the Faculty of Nursing at Burapha

University for their worthwhile knowledge, pleasant attachment, lots of help, and

kindness. I sincere thanks to graduate studies of Faculty of Nursing Burapha

University for the support grant of my master thesis. My great thanks also goes to Dr.

Benediktus Ellie (Psychiatrist), the nurses, and the staffs of Menur Mental Hospital,

Surabaya, Indonesia, for their help as well to the family caregivers for their

willingness to share their experiences with me.

My heartfelt gratitude goes to my beloved parents and family for their love,

support, and prayers for me during my study in Thailand. My deepest thanks is also

extended to my dear classmates from Vietnam and Bhutan, and the friends I met from

Thailand, Nepal, Bangladesh, Kenya, Cambodia, Laos, Chinese, and Indonesia

throughout my stay in Thailand. I wish that we are granted success in study and life,

and that our friendships will never end.

Faida Annisa

v

56910099: MAJOR: NURSING SCIENCE; M.N.S.

KEYWORDS: FAMILY CAREGIVERS’ BURDEN/ SCHIZOPHRENIA/

INDONESIA

FAIDA ANNISA: PREDICTING FACTORS OF BURDEN AMONG

FAMILY CAREGIVERS OF PATIENTS WITH SCHIZOPHRENIA IN

SURABAYA, INDONESIA. ADVISORY COMMITTEE: PORNPAT

HENGUDOMSUB, Ph.D., WANNEE DEOISRES, Ph.D. 104 P. 2015.

The purposes of this predictive study were to describe the burden of

the family caregivers of patients with schizophrenia, and to examine its predictors,

including the family caregivers’ perceived severity of the patients’ illness, their

knowledge about schizophrenia, their attitude towards schizophrenia, the caregiving

appraisal, and perceived social support. A total of 120 family caregivers of patients

with schizophrenia, who visited at the outpatient department of Menur Mental

Hospital in Surabaya in Indonesia, participated in this study. They were randomly

selected using the simple random sampling technique. Structured questionnaires were

used for the data collection, including general information of both family caregivers

and the patients, perceived severity of the patients’ illness, knowledge and attitude

towards schizophrenia, caregiving appraisal, perceived social support, and burden.

The results revealed that 93 family caregivers (77.50 %) reported burden

during their care for the patients. Standard multiple regression analysis indicated that

perceived severity of patients’ illness, attitude towards schizophrenia, perceived social

support, knowledge about schizophrenia, and caregiving appraisal significantly

explained 51 % of the variance in the family caregivers’ burden (R2 = .51, F = 24.07,

p < .001). Specifically, the statistically significant predictors were perceived severity

of the patients’ illness (β = .41, p < .001), attitude toward schizophrenia (β = -.38,

p < .001), and perceived social support (β = -.27, p < .01). These findings provide

a better understanding regarding burden and its predictors among Indonesian family

caregivers of patients with schizophrenia. These results can be used as baseline data

for the development of proper nursing intervention aimed at alleviating burden, which

will in turn help enhance the quality of life among these caregivers and the patients.

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CONTENTS

Page

ABSTRACT .......................................................................................................... v

CONTENTS .......................................................................................................... vi

LIST OF FIGURES .............................................................................................. viii

LIST OF TABLES ................................................................................................ ix

CHAPTER

1 INTRODUCTION ..................................................................................... 1

Background and significance .............................................................. 1

Research objectives ............................................................................. 7

Research questions .............................................................................. 7

Research hypotheses ........................................................................... 7

Scope of the study ............................................................................... 8

Research framework ........................................................................... 8

Definitions of terms ............................................................................ 9

2 LITERATURE REVIEWS ........................................................................ 11

Overview of schizophrenia ................................................................. 11

Family caregivers of patients with schizophrenia ............................... 16

Family caregivers’ burden .................................................................. 18

Predicting factors of family caregivers’ burden .................................. 20

Summary ............................................................................................. 24

3 RESEARCH METHODOLOGY .............................................................. 25

Research setting .................................................................................. 25

Population and sample ........................................................................ 25

Instruments .......................................................................................... 26

Ethical consideration ........................................................................... 29

Data collection procedures .................................................................. 30

Data analysis ....................................................................................... 30

vii

CONTENTS (CONTINUED)

CHAPTER Page

4 RESULTS .................................................................................................. 32

Description of patients and family caregivers’ characteristics 32

Description of the study variables....................................................... 36

Predicting factors of family caregivers’ burden .................................. 37

5 CONCLUSION AND DISCUSSION ....................................................... 39

Summary of the findings ..................................................................... 39

Discussion ........................................................................................... 41

Implication for nursing ....................................................................... 48

Limitation of study .............................................................................. 49

Recommendation for future research .................................................. 49

Conclusion .......................................................................................... 49

REFERENCES ..................................................................................................... 51

APPENDICES ...................................................................................................... 61

APPENDIX A ........................................................................................... 62

APPENDIX B ........................................................................................... 65

APPENDIX C ........................................................................................... 78

APPENDIX D ........................................................................................... 91

APPENDIX E ........................................................................................... 93

APPENDIX F ............................................................................................ 95

APPENDIX G ........................................................................................... 97

BIOGRAPHY ....................................................................................................... 104

viii

LIST OF FIGURES

Figures Page

1 Research Framework .................................................................................... 9

2 Family Caregiving Burden Framework ....................................................... 20

ix

LIST OF TABLES

Tables Page

1 Demographic characteristics of patients ...................................................... 32

2 Demographic characteristics of family caregivers ....................................... 34

3 Description of the study variables ................................................................ 36

4 Correlations among the study variables ....................................................... 38

5 Predicting factors of burden among Indonesian family caregivers .............. 38

CHAPTER 1

INTRODUCTION

Background and significance

Schizophrenia, meaning split minds, is one of the most severe mental

illnesses and it presents in all cultures, races, and socioeconomic groups (Bostrom &

Boyd, 2012). The World Health Organization [WHO] (2014 b) estimated that

schizophrenia affects more than 21 million people worldwide, and typically begins in

late adolescence or early adulthood. According to data from the Ministry of Health

The Republic of Indonesia (2013), the prevalence of severe mental disorder

(Schizophrenia) in Indonesia was 1.7 per 1000 people, or, in other words, it affected

around 3,400 people from the total of 2,000,000 people. Schizophrenia was the most

common of mental disorders in Menur Mental Hospital Surabaya, Indonesia.

The number of mentally ill patients who were admitted to this hospital in

the year 2013 was 2,435 persons. Among them, 1,878 persons were diagnosed with

schizophrenia (with code F.20, according to ICD-10). In the outpatient department of

this hospital, from a total of 28,466 registered patients during 2013, there were 24,589

patients diagnosed with schizophrenia.

Patients with schizophrenia have a long duration of illness and a limited

ability to perform daily activities and interact with other people. When patients with

schizophrenia are discharged from hospitals, the obvious effect is the impact to those

who care for them in community. The shifting from hospital-based care to

community-based care that began more than forty years ago resulted in most

psychiatric patients now being cared for by their families (Baronet, 1999; Caqueo-

Urizar et al., 2014; Grad & Sainbury, 1963). According to National Alliance for

Caregiving [NAC] (2010), the family caregiver is the person who is responsible for

the physical, emotional and financial support of a family member, friend, or life

partner, who is unable to care for him/ herself due to illness, injury or disability

without payment. In Western countries, the studies showed about 25 % - 50 % of

discharged patients with schizophrenia live and need advanced caring from their

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families (Chan, 2011). Likewise, in Indonesia, almost all discharged patients with

schizophrenia will return to their own homes in the communities. However,

the families may not be aware of what they will face as well as what they should do in

caring for the patients with schizophrenia (Lim & Ahn, 2003; Rose, 1996), even

though they naturally feel responsible to do it. They may have no idea what is

happening when the patients suddenly have an acute episode of illness, such as

engaging in frightening or violent behaviors, talking to themselves, withdrawing from

everyone, and lacking interest to be involved in activities, etc. This occurs because

the families have not had previous experience or guidance; the patients remain in

crisis for a long period of time, and patients and families may encounter shame and

stigma (Seng, 2005). According to Reinhard et al. (2008), family caregivers of

patients with schizophrenia can be considered by mental health care professions as

“secondary patients” and “unpaid providers”, who provide care for the patients and

should be taught how to access and best utilize available resources.

In developed countries, the move towards community-based care for family

caregivers has been well-organized through various caregiver support programs

(NAC, 2010; World Federation of Mental Health [WFMH], 2010), but for developing

countries, the community mental health services still need more effective approaches

with the family as well as the improvement of both the resource availability and

health policy in order to provide continuous professional health care for patients,

family, and community (Eaton et al., 2011; Saraceno et al., 2007). In Indonesia, health

care professions play an important role in delivering mental health services for

patients with mental illness, their families and society. Care is also provided by

non-profit organizations, such as the Indonesian Mental Health Association,

the Komunitas Peduli Skizofrenia Indonesia, and the Suryani Institute for Mental

Health. However, continuous mental health services from hospital to the community

after the patients have been discharged still remains insufficient and unequal across

country due to various factors, such as poor management and inadequate distribution

of resources, and lack of an expansion of mental health policy. In addition, mental

health care still focus on curative aspects, thus it does not address ways to help

the patients to be productive nor does it improve the abilities of family members who

serve as the caregivers.

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Family caregivers for persons with schizophrenia may find their tasks more

challenging than family caregivers for other patients of disabilities. This is because

the caregiving demands for patients with schizophrenia are influenced by the severity

of psychotic symptoms and functional limitation of the patients (Chien et al., 2004).

In addition, the caregiving demands involve the available resources of family

caregivers, including their physical and mental health status, their financial resources,

and sufficient information and skills regarding the patients’ illnesses and care, which

requires adequate social support (Caqueo-Urizar et al., 2009; Cassidy et al., 2001;

Heru, 2000). Patients with schizophrenia have psychotic symptoms including

hallucination, delusions, disorganized speech and behaviors, and negative symptoms

(American Psychiatric Association [APA], 2013), which are unpredictable,

frightening, and disturbing behaviors that affect family caregivers (Seng, 2005).

In addition, the impairments due to the disease of schizophrenia lead to dysfunctional

or disabling symptoms that reoccur during the course of illness (Herzog, 2014).

The patients’ clinical features mentioned above may make family caregivers feel

overwhelmed for a long period of time, unless they prepare themselves well. When

administering care to the patients with chronic mental illness, families need to adjust

their capabilities in providing care to the patients, including increasing their

understanding toward the nature of the illness, the care provided, and the ways to

improve their skills in managing psychotic symptoms and in enhancing the patients’

abilities to handle daily functional tasks (Jagannathan et al., 2011; Rose, Mallinson, &

Gerson, 2006).

The availability of social support should be recognized as an essential

resource for family caregivers who provide care for patients with schizophrenia due to

the following reasons: 1) the inadequate acceptance regarding persons with mental

illnesses in society and also the negative attitude toward schizophrenia can make them

feel helpless and lonely (Thompson et al., 2002); 2) the insufficient mental health

services from health care providers in supporting and enhancing the caregivers’

abilities can make the caregivers feel unprepared and vulnerable (Reinhard et al.,

2008). Therefore, family caregivers in almost every country are more likely to

perceive their burden as one of negative consequences in caring for patients with

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schizophrenia (Baronet, 1999; Caqueo-Urizar et al., 2014; Chan, 2011; Pratima et al.,

2011).

Awad and Voruganti (2008) defined the burden of care as “its impact and

consequences”. This refers to the physical, psychological, social, and financial

statuses. When family caregivers perceive burden, the results will not only affect

themselves, but also the patients, other family members, and the health care system

(Chou, 2000). In relation to the caregiving demands, family caregivers will not be

able to care for the patients as well as themselves if they perceive burden (WFMH,

2010), and patients may be more prone to relapse due to the high emotional climate

present in their homes (Pratima et al., 2011), which may be noticed by health care

professions who want to provide adequate health service for patients and family in

community settings (Donelan et al., 2002). Nevertheless, providing care for

the patients not only causes negative consequences, it also has a positive side that

the family caregivers may experience while caring for their loved ones. The positive

side would be related to their personal values and cultures. Some caregivers have

reported satisfaction in providing care to the patients, such as enjoying the time spent

with patients, feeling closer to patients, and having a sense of being needed and

appreciated (Bearon, 2013; Huang et al., 2009). The positive aspect of caregiving is

often missing from the studies that have discovered burden that caregivers perceived

in caring for patients with schizophrenia; hence, the focus that should demand

attention is how families become aware of the nature of their caregiving experience,

which will in turn help reduce their burden level and help them obtain intrapersonal

reward (Heru, 2000; Kulhara et al., 2012). Therefore, the present study aimed to

explore the burden of family caregivers by analyzing the family caregivers’

characteristics including perceived severity of patients’ illness, knowledge about

schizophrenia, attitude toward schizophrenia, caregiving appraisal, and perceived

social support.

Patients with schizophrenia usually have relapse episodes which occur

sometime after recovery (WFMH, 2008); however, the prognosis will be more

positive for those who receive support and effective treatments with respect to

the phase of schizophrenia. Therefore, the patients’ progress should be reevaluated

regularly and adjusted for treatment when needed (Herzog, 2014). Assessing

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the family caregivers’ perceptions about the severity of the patients’ illness will

provide information about what families face when coping with the behaviors and

psychotic symptoms of patients, which may relate to how they perceive burden. It has

been found in numerous studies that the higher disturbance behaviors and severe

psychotic symptoms of patients with schizophrenia were associated with higher levels

of burden among family caregivers (Grandon et al., 2008; Hasui et al., 2002; Koukia

& Madianos, 2005; Long, 2011; Lowyck et al., 2004; Papastavrou et al., 2010; Zahid

& Ohaeri, 2010). Although there have been various studies which consistently found

significant relationships between the severity of patients’ illness and the burden of

family caregivers, these findings were not from study conducted in Indonesia.

Burden is defined as the family caregivers’ perception about the effects of

their caregiving on the patients with schizophrenia. The various characteristics of

family caregivers influence their perceived burden (Baronet, 1999). One of

characteristics that has a significant correlation with the burden is the knowledge

about schizophrenia. Some studies have shown the effectiveness of psychoeducational

intervention in order to reduce family caregivers’ burden by providing information

about schizophrenia (Sharif et al., 2012; Tanriverdi & Ekinci, 2012). On the other

hand, some studies have found that the more knowledge about schizophrenia family

caregivers had, the more burden they would perceive (Adianta et al., 2013; Sefasi

et al., 2008). In addition, a study conducted by Lim and Ahn (2003) found that family

caregivers’ knowledge had no direct effect on the burden of family caregivers, but it

had an indirect effect on subjective burden through the negative coping style of family

caregivers. One study in Menur Mental Hospital, Surabaya, Indonesia found that most

families of patients with schizophrenia (53 %) had moderate level of knowledge

regarding schizophrenia (Annisa, 2007). According to these findings, it appears that

the relationship between burden and knowledge about schizophrenia needs further

investigation.

It is unclear whether an increase in knowledge about schizophrenia among

family caregivers will affect their attitude toward the patients and the illness itself,

thereby affecting their burden. In addition, the lack of knowledge or misunderstanding

about schizophrenia may cause a negative attitude toward those who live with

schizophrenia, which in turn may affect the way family caregivers provide care for

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the patients (Holmes et al., 1999; National Alliance on Mental Illness [NAMI], 2008;

WFMH, 2008). The emphasis on family interventions should not only to provide

information, communication, coping training, and support reinforcement, but should

also improve the attitudes that family caregivers have toward schizophrenia after they

have attended the supportive program, which in turn impact their perception of burden

(Bhattacharjee et al., 2011; Worakul et al., 2007). The relationship between burden

and attitude was found in a study conducted in Chile by Caqueo-Urizar et al. (2011).

Its results affirmed that the worse the caregivers’ attitude, the higher level of burden

the caregivers perceived. The relationship between the burden and the attitude of

family caregivers toward schizophrenia had not been explored in Indonesia; hence

this correlation needs to be examined.

When family caregivers have positive attitude, they will respond to

the patients in positive way regarding their cognitive, emotional, and behavioral, and

this will also influence their appraisal of the caregiving experience to be more

positive. This will have an impact on caregivers’ level of burden (Gutierrez-

Maldonado et al., 2008; Kulhara et al., 2012). According to a study conducted with

Taiwanese and Indian family caregivers, those with a more positive interpretation of

caregiving reported lower levels of burden during their care to the patients with severe

and persistent mental illness (Schizophrenia) (Hsiao & Van Riper, 2008; Kate et al.,

2013 a). However, these findings were inconsistent with the result of the study that a

positive caregiving appraisal was unrelated to the objective burden (Kate et al.,

2013 b). Therefore, these inconsistent findings need to be assessed more in order to

increase our understanding about the impact of positive caregiving on burden among

family caregivers of patients with schizophrenia, especially in Indonesia, which is

considered to be a developing country that has various ethnics and cultures.

Social support is one of the significant factors of family caregivers which

influence their burden (Chan, 2011; Chou, 2000). It is an important factor that should

be considered in relation to community-based care. Social support was the significant

predictor of caregivers’ burden in various studies; the more social support the family

caregivers obtained, the lower level of burden they would perceive (Adeosun, 2013;

Chien et al., 2007; Chien et al., 2004; Grandon et al., 2008; Magliano et al., 1998,

2000), though there have differences across countries regarding the culture and social

7

characteristics of people, and the quality of mental health service in community

settings. Adequate social support for the family caregivers may help them to cope

with the stressful situation caring for patients with schizophrenia, as found in

the study in Indonesia (Rafiyah et al., 2011). However, this study did not explore

relationship between the perceived social support and burden among these Indonesian

family caregivers.

Although, the characteristics of the family caregivers of patients with

schizophrenia influence levels of burden across countries, our understanding toward

this issue in Indonesia, which has unique sociocultural characteristics, remain limited.

Hence, the results obtained from this study would provide a better understanding

about Indonesian family caregivers’ burden in order to improve the quality of mental

health care services as well contribute to evidence-based research in this area.

Research objectives

The purposes of this study were to describe the burden of family caregivers,

and to examine its predictors, including the family caregivers’ perceived severity of

patients’ illness, knowledge about schizophrenia, attitude towards schizophrenia,

caregiving appraisal, and perceived social support in Surabaya, Indonesia.

Research questions

1. What is the Indonesian family caregivers’ burden?

2. Can the Indonesian family caregivers’ perceived severity of illness of

patients with schizophrenia, knowledge about schizophrenia, attitude toward

schizophrenia, caregiving appraisal, and perceived social support predict burden?

Research hypotheses

The family caregivers’ perceived severity of illness of patients with

schizophrenia, knowledge about schizophrenia, attitude toward schizophrenia,

caregiving appraisal, and perceived social support could combine to predict the family

caregivers’ burden.

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Scope of the study

This study was conducted with 120 family caregivers who accompanied

the patients with schizophrenia to visit the outpatient department at Menur Mental

Hospital in Surabaya, Indonesia during January 19 to February 6, 2015.

Research framework

In this study, the research framework was based on the use of the Family

Caregiving Burden Framework (Rungreangkulkij & Gilliss, 2000), and a literature

review. According to the Family Caregiving Burden Framework, the causes of family

caregivers’ burden can be classified into the patients’ characteristics and the family

caregivers’ characteristics. The patients’ characteristics included age, gender, duration

of illness, number of hospitalizations, functional levels and psychotic symptoms;

whereas, the family caregivers’ characteristics encompassed of age, gender,

education, marital status, quality of life, health status, financial households, duration

of caregiving, knowledge about schizophrenia, family functioning, positive caregiving

experience, relationship with the patients, attitude about schizophrenia; perceived

social support, and coping strategies (Adeosun, 2013; Chan, 2011; Caqueo-Urizar

et al., 2011; Chien et al., 2007; Grandon et al., 2008; Lim & Ahn, 2003; Papastavrou

et al., 2010; Ricard et al., 1999; Schene et al., 1998). In addition, the positive

caregiving experience among family caregivers also need to be addressed in this study

in order to have a better understanding of burden (Rungreangkulkij & Gilliss, 2000).

For this initial study, which conducted at Menur Mental Hospital in

Surabaya, Indonesia, only the family caregivers’ characteristics were examined, and

only their influenced were tested on the perceived burden among these family

caregivers. Based on empirical findings, the selected factors, including the perceived

severity of patients’ illness, the knowledge about schizophrenia, the attitude toward

schizophrenia, the caregiving appraisal, and the perceived social support predicted to

burden among family caregivers of patients with schizophrenia. The research

framework can be summarized in Figure 1.

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Figure 1 Research framework

Definition of terms

Family caregivers of patients with schizophrenia

Family caregivers of patients with schizophrenia refer to the persons who

have major roles in caring for their family members diagnosed with schizophrenia.

Perceived severity of patients’ illness

Perceived severity of patients’ illness is defined as the frequency of

behaviors and psychotic symptoms of patients with schizophrenia which were rated

by the family caregivers. It was assessed with the Psychiatric Behavior and Symptom

Perception Scale developed by Pipatananond (2001). This scale contained five aspects

of illness severity: depressive symptoms, inappropriate performance, psychotic

symptoms, attention and memory problems, and addictive behaviors.

Knowledge about schizophrenia

Knowledge about schizophrenia refers the extent of understanding among

family caregivers regarding schizophrenia, which include schizophrenia’s definition,

cause, symptoms, and treatment. The simple 7-items of NAMI Quiz test regarding

this knowledge in Indonesian version (Adianta et al., 2013) was used to determine

knowledge among the family caregivers.

Attitude toward schizophrenia

Attitude toward schizophrenia refers to the kinds of responses of family

caregivers regarding the affective, cognitive, and behaviors components about

schizophrenia and the patients. The Attitudes Towards Schizophrenia Questionnaire


Family Caregivers’

Burden



Caregiving appraisal

Perceived social support

10

for Relatives (ATSQ) developed by Caqueo-Urizar et al. (2011) was used to measure

the above components.


Caregiving appraisal refers to the family caregivers’ perception about

the positive aspects of caregiving experience during their care for the patients with

schizophrenia. It was assessed by Scale for Positive Aspects of Caregiving Experience

(SPACE) developed by Kate et al. (2012). This scale comprised four factors:

caregiving personal gains, motivation for caregiving role, caregiver satisfaction and

self-esteem, and social aspect of caring.


Perceived social support is defined as the discernment among family

caregivers toward the help or support they received from their significant others.

The Personal Resource Questionnaire (PRQ2000) developed by Weinert (2003) was

used to assess this perceived social support.

Family caregivers’ burden

Family caregivers’ burden refers to how the family caregivers perceive

the negative consequences in providing care for the patients with schizophrenia.

In this study, the Burden Assessment Schedule (BAS) Indonesian version developed

by Djatmiko (2005) was used. It contained 20-items which encompassed of five

domains: impact on well-being, impact on marital relationships, appreciation of

caring, impact on relations with others, and perceived impact of severity of

the disease.

CHAPTER 2

LITERATURE REVIEWS

This chapter presents the literature review including overview of

schizophrenia, family caregivers of patients with schizophrenia and burden and its

predicting factors of family caregivers’ burden.

Overview of schizophrenia

Definition

The name schizophrenia comes from the Greek words ‘schizo’ (meaning

split) and 'phrenos’ (meaning mind) to reflect the poor connection between

the thought processes, emotion and behavior that are caused by the disruption of

neurodevelopment in the brain (Herzog, 2014; WFMH, 2008).

Etiology

The precise etiology or pathogenesis of schizophrenia remains unclear, but

some references classified the etiology into genetic, neurobiological, substance abuse,

psychological and environmental, and from the scientific study called diathesis-stress

model of schizophrenia (Herzog, 2014; Tandon, Keshavan, & Nasrallah, 2008;

Warren & Antai-Otong, 2008).

1. Genetic factors: Based on the recent family studies, there is significant

evidence to further strengthen the premise that genetics is only one part of

the pathogenesis of schizophrenia.

2. Neurobiological factors: The neurobiological changes occur within five

system areas: three anatomic systems – prefrontal, limbic, and basal ganglia – and two

functional systems – language and memory. In addition, disruptions

in communication pathways in the brain caused by the structural brain abnormalities

in patients with schizophrenia are verified using brain imaging techniques to show it.

3. Substance Abuse factors: Persons’ use or abuse of alcohol or other

substances create physical and psychological changes that predispose

the development of schizophrenia.

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4. Psychological and environmental factors: The psychic and environmental

stressors that occur within a person during prenatal and developmental periods within

the growing child’s environment; these etiologies may include prenatal risk factors,

family stressors, social, psychological, and physical stressors, and from environment

such as toxins.

5. Diathesis Stress Model: From Tandon et al. (2008) research, they

depicted “Etiology to Pathophysiology to Illness: Models of Schizophrenia” where

in schizophrenia occurs when multiple inherited gene abnormalities combine with

environmental factors. This model is a holistics approach to the examination of causes

of schizophrenic disorder.

Diagnosis

Schizophrenia encompasses the Schizophrenia Spectrum and Other

Psychotic Disorder group with schizotypal (Personality) disorder, brief psychotic

disorder, schizophreniform disorder, schizoaffective disorder, substance/ medication-

induced psychotic disorder, psychotic disorder due to another medical condition,

catatonia associated with another mental disorder, catatonia disorder due to another

medical condition, unspecified catatonia, other specified schizophrenia spectrum and

other psychotic disorder, and unspecified schizophrenia spectrum and other psychotic

disorder (APA, 2013). Those disorders are defined by abnormalities in one or more of

the following five domains: Delusions, hallucinations, disorganized thinking (speech),

grossly disorganized or abnormal motor behavior, and negative symptoms.

Diagnostic criteria for schizophrenia disorder (DSM-5 code: 295.90; ICD-10

code: F20.9) according to DSM-5, APA (2013):

A. Two (or more) of the following, each present for a significant portion of

time during a 1-month period (or less if successfully treated). At least one of these

must be (1), (2), or (3): 1) Delusions, 2) Hallucinations, 3) Disorganized speech,

4) Grossly disorganized or catatonic behavior, (5) Negative symptoms.

B. For a significant portion of the time since the onset of the disturbance,

level of functioning in one or more major areas, such as work, interpersonal relations,

or self-care, is markedly below the level achieved prior to the onset (or when the onset

is in childhood or adolescence, there is failure to achieve expected level of

interpersonal, academic, or occupational functioning).

13

C. Continuous signs of the disturbance persist for at least 6 months. This

6 month period must include at least 1 month of symptoms (or less if successfully

treated) that meet Criterion A (i.e., active-phase symptoms) and may include periods

of prodromal or residual symptoms. During these prodromal or residual periods,

the signs of the disturbance may be manifested by only negative symptoms or by two

or more symptoms listed in Criterion A present in an attenuated form (e.g., odd

beliefs, unusual perceptual experiences).

D. Schizoaffective disorder and depressive or bipolar disorder with

psychotic features have been ruled out because either 1) no major depressive or manic

episodes have occurred concurrently with the active-phase symptoms, or 2) if mood

episodes have occurred during active-phase symptoms, they have been present for

a minority of the total duration of the active and residual periods of the illness.

E. The disturbance is not attributable to the physiological effects of

a substance (e.g., a drug of abuse, a medication) or another medical condition.

F. If there is a history of autism spectrum disorder or a communication

disorder of childhood onset, the additional diagnosis of schizophrenia is made only if

prominent delusions or hallucinations, in addition to the other required symptoms of

schizophrenia, are also present for at least 1 month (or less if successfully treated).

Symptoms

As mentioned above, patients with schizophrenia have psychotic symptoms

(APA, 2013; Herzog, 2014; Warren & Antai-Otong, 2008) as this following:

1. Delusion is a personal belief based on an incorrect inference of external

reality. The types of delusions include paranoid (irrational fear of others), grandiose

(powerful person), religious, nihilistic, somatic (body changing unusually); and be

complicated further by circumstantiality, tangentiality, flight of ideas, thought

withdrawal, thought insertion, thought control, or thought broadcasting.

2. Hallucinations are false perceptual distortions. The type of hallucinations

regard to the five senses (sight, sound, taste, touch, and smell), there are auditory,

visual, olfactory, gustatory, tactile, cenesthetic, kinesthetic. In addition, hallucinations

differ from illusions, for illusions the stimulu(s) can identifiable.

3. Disorganized thinking (speech) is inferred from the person’s speech.

The type of this symptoms are associative looseness (illogical thinking and difficult to

14

follow), clang association (using rhyming words instead meaning), word salad

(meaningless words), neologisms (made-up words), echolalia (repeating words from

other), rapid or pressured of speech.

4. Abnormal motor behavior refers to the odd, bizarre, dysfunctional, and

agitated behavior including catatonia (increase or decrease in rate and amount of

movement), aggresion or aggitation or violence, echopraxia (mimicking of another),

gesturing or posturing unusual and illogical experessions, stereotyped behaviors

(repeated motor behavior illogically).

5. Negative symptoms including avolition (lack motivation to do activities),

alogia (poverty of speech), anhedonia (lack of ability in pleasure experience),

asociality (lack interest in social interactions), diminished emotional expression (flat,

blunted, inappropriate, bizarre).

Course of the illness

Patients with schizophrenia have heterogenous clinical symptoms in course

of the illness that are associated with impaired functional abilities level in which

the effective treatments for patient fit with the present phase of illness (Herzog, 2014)

as these following:

1. Acute episode is a time period in which the symptom criteria are fulfilled

with resultant loss of functional abilities; increased care or hospitalization required.

The outcomes intervention on this phase are patient safety and stabilization.

2. Stabilization episode where the symptoms are diminishing, and there is

improvement level of functioning; partial hospitalization or care in community

needed. The outcomes intervention on this phase are to ensure the patient become

stabilized on medications, control or cope with the symtoms, and address the patients

ability in social and occupational functioning.

3. Maintenance episode where the patient is at or nearing baseline (or

premorbid) functioning; symptoms are absent or diminishing; level of functioning

allows the patient to live in the community. The outcomes intervention on this phase

focus on maintaining achievement, preventing relapse, adhering to treatment, and

a satisfactory quality of life.

15

Mental health care in Indonesia

Law of Republic of Indonesia number 8 of 2014 comprises all mental health

areas include definition of mental health and the people, the right and obligations,

cover of mental health care include resources, system, efforts, responsibilities and

authority, community participation, and criminal provisions of the act.

The Constitution of the Republic of Indonesia Year 1945 ensure that everyone can

live physical and spiritual prosperity and obtain service health with management

health development. Health development goals are be achieved to attain a maximum

degree of health height. To achieve these objectives, there should be a variety of

health efforts, including efforts to approach of mental health promotive, preventive,

curative, and rehabilitative. Mental health services are be organized in an integrated,

comprehensive, and sustainable by the government, local government, and/ or society.

Law on Mental Health for the purpose of ensure that everyone can achieve a good

quality of life, enjoy a healthy mental life, free from fear, pressure, and other

disorders that can interfere the mental health; ensure that everyone can develop

the potential of intelligence; provide protection and ensure the mental health services

for people who have mental problems or disorders based on human rights; provide

health services in integrated, comprehensive, and continuous through promotive,

preventive, curative, and rehabilitative; ensure the availability and affordability of

resources in mental health services; efforts to improve the quality of mental health in

accordance with the development of science and technology; and provide

opportunities to people who have mental problems or disorders to be exercise

the rights and obligations as a citizen of Indonesia.

The first mental hospital in Indonesia had built at 1882, and today almost all

provinces have one or more psychiatric hospital. Some health departments or

provincial government (almost 18 provinces) have started the mental health services

as development programs in several primary health centers (Keliat, 2013). These

services include the promotion program, prevention of mental health problems in

community which have risk factors, and recovery and rehabilitation programs for

people who have mental health illness so that they can be independent and productive

again in order to resolve the problems of mental health by developing the effective

community-based mental health services. However, those services remain inadequate

16

and inequality across country. In addition, the services more focus on the patients, and

lack of attention to family who caring for the patients. As resulted of shifting from

hospital-based care to community-based care, family of patients with mental illness

will be charged to care the patients at home and help the patients to be able to live in

community. It should be noticed by health care professions in Indonesia. One of

supportive program for the family of patients with schizophrenia held every

1-3 months in Menur Mental Hospital, it called “Family Gathering”. The aim is to

facilitate the families to share and support each other while educate them about

the mental health and caregiving for the patients from health care pofessions.

Family caregivers of patients with schizophrenia

The definitions of family traditionally refer to a nuclear family (parents and

children) and extended family (parents, childrens, grandparents, aunts, uncles, and

cousins) (Blum & Sherman, 2010). Caregivers or carers are people who provide care

to care-receivers (i.e. family members, partners or friends) each year because they are

sick, elderly or have a disability, and the care they provide is unpaid, and often,

unrecognized and under-supported (WFMH, 2010). The criteria for defining ‘family

caregiver’ include: a) the type of assistance they provide (e.g. instrumental or

emotional assistance), and b) the extent of assistance they provide (e.g. hours of care

provided, number of times a week care is provided) (Donelan et al., 2002).

There are three types of caregivers: primary, secondary, and long-distance

(Quinn, 2006). Primary caregivers are the family who perform most of the day-to-day

aspects of care, secondary caregivers are the person who help more with not

continuous activities or with emotional support, and long-distance caregiver refers to

someone who is not living together with the care receiver, intermittently visits

the care receiver, but has sustained and regular contact with the care receiver. As

family caregivers, they have tasks such as helping on activities of daily living (ADL:

getting out of bed, showering/ bathing, getting dressed, eating) and instrumental

activities of daily living (IADLs: cooking, shopping, doing laundry, transporting

oneself from place to place), and the expanded tasks such as doing skilled nursing

care, cognitive support, and do kind of care management such as preventing more

17

illness, supervisory delegating care tasks to secondary caregivers, and arranging

the visits to hospital (Levine et al., 2004; Quinn, 2006).

Caregiving literature about families with a relative with mental illness

regarding culture across countries is catching the attention. In chronic illness, access

to programs and services and preferences for certain types of assistance are often

sharply divided along racial and ethnic lines (Morris & Edwards, 2006). Some

differences have been reported in caregiving among different ethnic groups. Indonesia

consists of hundreds of distinct native ethnic and linguistic groups. Those ethnics

have varied culture and beliefs that influence the caregiving experience among family

caregivers in caring patients with schizophrenia.

Caregiving was viewed as a feminine quality; accordingly the caregiver is

usually a wife, mother, grandmother, or other female family member (Blum &

Sherman, 2010). The majority of family caregivers are women (66 %), although men

also serve as caregivers. According to studies in Indonesia, more than 40 % caregivers

for patients with schizophrenia are parents, and only in a study of Fitrikasari et al.

(2012) were only 35 % of caregivers females; whereas others noted 74 % and 68 %,

respectively (Adianta et al., 2013; Fitrikasari et al., 2012; Rafiyah et al., 2011).

However, the caregiver who is closest to and the most involved in the daily life of

the care-receiver is usually the person most accountable for either doing or seeing that

care is done (Morris & Edwards, 2006).

The illness has impact not only the patient but also on the family. As

the patient was diagnosed, the family caregivers expressed early frustration, evolved

into grief and sadness. Families struggled toward the stigma in society that as

an important factor (Huang et al., 2009). Moreover, the family caregivers need to

understand the demands of caring for patients with schizophrenia, and the effort of

family caregivers to get and stay well on a day-to-day basis. Most patients with

schizophrenia have impaired cognitive and social functioning and residual symptoms

in which family caregivers perform the tasks more tough and tireless. As they struggle

to balance what their needs such as go to work, spend time with family and friends,

and their roles as a primary caregiver, their own health status are often neglected.

In addition, family caregivers receive little attention from the society including mental

health care providers and policies (Chan, 2011). Therefore, some family caregivers

18

perceive burden as negative consequences caring patients with schizophrenia

(Baronet, 1999; Chan, 2011), although other family caregivers cope and manage

the consequences as well that result they report more positive experience in care given

to the patients (Bearon, 2013; Donelan et al., 2002; Huang et al., 2009).

The combined approach directed at patients and family caregivers is one

evidence-based approach that is providing integrated, effective, and efficient care for

patients with schizophrenia and their family caregivers (Pratima et al., 2011) in order

to transform the health systems to face the challanges of deinstitutionalization in

developing countries (WHO, 2014 a). As the integrated health care providers, nurses

have this opportunity to care for the family caregivers through nursing process.

The family assessment should cover the family complaints, the strengths and

resources of family, and caregiving experiences (Blum & Sherman, 2010), then

the interventions address the sociocultural in focusing on what family’s needs may be;

including provide information, emotional support, referrals for continued support in

the community, and reward their caregiving experiences (Heru, 2000; Rose et al.,

2006; Reinhard et al., 2008) in order to prevent or reduce their burden, and more

positive both in caregiving experiences and attitude towards schizophrenia.

Family caregivers’ burden

Burden is one of the commonly used variables in caregiving research in

psychiatric, gerontology, pediatric, and adult fields. Around sixty years ago,

the medical literature had identified the type and extent of families burden in caring

patients with schizophrenia (Rose, 1996), and psychiatric literature was the first that

explain about the caregiver burden term in with various concepts and measurements

(Papastavrou et al., 2010).

The concept of family burden was first introduced into the literature by Grad

and Sainsbury (1963) in an examination of community care service for the mentally

ill as compared with in hospital care service. They interviewed the member of

the household who was a patient’s nearest relative or closest contact about the effect

of caring for the patient at home, including any negative consequences such as

the abnormalities of behavior likely to trouble families, socio-economic status of

household, social and leisure activities of the family, and health of the household

19

members. Hoenig and Hamilton (1966) divided burden into objective and subjective

in their cohort study with caregivers of schizophrenic patients. Objective burden

refers to two things: 1) The number of adverse effects on the household, such as

financial loss, effects on health, on children and the general disruption of the life of

a family member, and 2) Any type of abnormal behavior in the patient which was

likely to be disturbing to others. Subjective burden refers to the extent caregivers feel

about its any effects of caring the patient. From Zarit et al. (1980) study with

caregivers of dementia patients, they investigated the caregiver burden as covering

the area’s most frequently mentioned by them as problems, including caregiver's

health, psychological well-being, finances, social life and the relationship between

the caregiver and the impaired person. The caregiver indicated how much discomfort

this concern caused by choosing the most appropriate phrase from "not at all" to

"extremely". It was assumed that discomfort caused by these situations places burden

upon the caregiver.

The assumption underlying the family caregiver burden is that caring for

a family member with severe mental illness imposes a caregiving burden which

the degree of the burden will vary according to other factors (Rungreangkulkij &

Gilliss, 2000), and the impact of burden involve the caregivers themselves, care-

receivers, other family members, and health care system (Chou, 2000). The causes of

burden of family caregivers in caring patients with schizophrenia classified into

patients’ characteristics and family caregivers’ characteristics as illustrated on family

caregiving burden framework (Figure 2). Patients’ characteristics include their

personal sociodemographics and clinical status; whereas family caregivers’

characteristics include their personal sociodemographics and kind of caregiver

resources (Chan, 2011; Grandon et al., 2008; Papastavrou et al., 2010; Schene et al.,

1998).

20

Figure 2 Family caregiving burden framework (Rungreangkulkij & Gilliss, 2000)

Predicting factors of family caregivers’ burden

As stated in chapter one, this present study aims to describe the burden of

family caregivers and examine its predictors specifically on family caregivers’

perceived severity of patients’ illness, their knowledge about schizophrenia, attitude

toward schizophrenia, caregiving appraisal, and perceived social support in Surabaya,

Indonesia. More details of the predictors mentioned above are as follows.


Having a family member with schizophrenia resulted in major changes in

family atmosphere, it is sustained crises and internal conflicts that consistently

reported by family caregivers (Rose et al., 2006). The patients will be discharged if

the acute episode has dissappered and the advance caring for the patients rely on

the family. The major demands of caring that family caregivers should fulfill is

determined by the patients’ severity of illness regard to the level of functionals ability

level (Chien et al., 2004; Chou, 2000), in which as the strong and consistent

correlation with the burden they perceived (Grandon et al., 2008; Hasui et al., 2002;

Koukia & Madianos, 2005; Lowyck et al., 2004; Papastavrou et al., 2010; Zahid &

Ohaeri, 2010).

Caregiver’s

characteristics:

Age

Gender

Relationship

Ethnicity

Socioeconomic status

Patient’s characteristics:

Age

Gender

Duration of illness

Symptoms Subjective

burden

Objective

burden

Coping

skills

Social

support

21

In above studies, some used the instruments that assess only psychotic

symptoms of patients, another used the instruments that assess psychological, social,

occupational functional ability of patients. In addition, some of above studies

evaluated patients’ severity of illness as perceived by caregivers, and others by

psychiatrist or researchers. However, the findings were similar in the sense that when

patients with schizophrenia have severe psychotic symptoms and more disturbance

behavior, they will be limited on functional daily, thus it leads to higher levels of

burden family caregivers. As the result from Long (2011), the perceived severity of

illness had high positively significant relationship with burden.


Providing knowledge to the family caregivers about schizophrenia and its

management has been emerged as an important treatment, since many problematic

areas related to the patients care can be successfully addressed such as family

caregivers’ burden problem (Bhattacharjee et al., 2011). Family caregivers need

important information and proper skill about schizophrenia since they will face the

call to caregiving to patient with schizophrenia. Through family intervention such as

psychoeducation, mutual support group, and behavioral family therapy, family

caregivers will get the information including what is schizophrenia, the causes,

the symptoms that patients had, what and how they can effectively treat the patients,

what they can do to prevent relapse, how to communicate with the patients and cope

with their unusual behaviors, where and how to seek needed help, and prevent or

reduce the burden that they may perceive as well as the support from each other

among family caregivers and from health care provider (Bhattacharjee et al., 2011;

Chien et al., 2004; Sharif et al., 2012; Tanriverdi & Ekinci, 2012; Worakul et al.,

2007).

Family caregivers should educate and prepare themselves which it will help

them to reduce stress and better cope during caring for the patients (NAC, 2010).

As the result from Lim and Ahn (2003), it shows that the family caregiver’s

knowledge had an indirect impact on the burden through negative coping, indicating

that the less caregiver’s knowledge, the more caregivers use negative coping

strategies, which results in caregiving perception of subjective burden. However, that

correlation between burden and knowledge about schizophrenia was different from

22

other studies. The finding on study with 90 family caregivers in Mzuzu, Malawi

(Sefasi et al., 2008) and study from Adianta et al. (2013) with 120 family caregivers

in Bali Province, Indonesia, showed that the family caregivers’ burden correlated

positively with their level of knowledge about schizophrenia.


Increasing knowledge and shaping the family caregivers’ attitude toward

patients with schizophrenia are helpful in reducing the family caregivers’ burden

(Worakul et al., 2007). The stigmatizing toward people with mental illness remains

worldwide. Public attitudes toward people living with schizophrenia rely on whether

or not those people are receiving treatment; even though people understand that

schizophrenia is a medical illness, the survey that conducted on Americans indicates

that there are limits to openness (NAMI, 2008). Magaru (2012) conducted study about

knowledge, attitude, and practices of adult caregivers of schizophrenia patients in Port

Moresby, Papua New Guinea; and found that most of the caregivers accepted their

patients as part of the family and considered it their responsibility (52.5 %) to care for

them, and preferably to administer treatment at home (52.5 %); the exception being

during severely aggressive episodes.

The way family caregivers respond to the disorder and the patients will

influence their burden levels when they caring for the patients with schizophrenia for

a long time. As regards attitudes, these have been defined as “predispositions to

associate certain kinds of stimuli with certain kinds of responses” (Stahlberg & Frey,

1994, as cited by Caqueo-Urizar et al., 2011). Such responses are classified as

affective (Assessing feelings as pleasant or unpleasant), cognitive (Concerning

beliefs, opinions, and ideas about the attitude object) and behavioral (Concerning

behavioral intentions or action predispositions). On their study, they assessed

the relationship between the attitudes of caregivers and the burden they experience in

Arica, Chile. They conclude that perceived burden of family caregivers is

significantly correlated with their attitude towards schizophrenia; the worse their

attitude, the high level of burden they perceived (Caqueo-Urizar et al., 2011).


Mental health care professions need to understand the cultural aspects of

caregiving experience among the families in order to assess more their positive

23

aspects and rewards than negative consequences as the important outcome in caring

for the patients (Huang et al., 2009). Definition of caregiving from Hermanns and

Mastel-Smith (2012) is “the process of helping another person who is unable to do for

themselves in a holistic (Physically, mentally, emotionally, and socially) manner; and

facilitated by certain character traits, emotions, skills, knowledge, time, and

an emotional connection with the care recipient”. The shifting based-care setting and

demographic of family life have challenged caregivers in providing care for

the patients (Donelan et al., 2002).

Numerous studies have been conducted about family caregiving for patients

with physical illness, elderly people, children, and mental illness. Some those studies

discovered the negative impact of caregiving experience of caregivers, whereas

positive experience of caregiving is a less researched area. Kulhara et al. (2012)

evaluated caregiving experience in 100 Indian caregivers of patients with

schizophrenia and found that there was an inverse relationship burden and some

aspects of positive caregiving experience. Another study in Taiwanese families that

used another instrument to assess positive aspect of caregiving found family

caregivers with more positive interpretation of caregiving reported lower levels of

their burden, during caring the patient with severe and persistent mental illness

(Schizophrenia) (Hsiao & Van Riper, 2008).


Family caregivers of patients with schizophrenia need support from their

family, friends, society, and health care professions to somehow deal with their daily

caring for the patients at home. As found on the study conducted with Chinese family

caregivers, after attended mutual support group intervention, the family caregivers’

burden score were decreased (Chien et al., 2004). The intervention for these family

caregivers of patients with schizophrenia provided the successful principles

throughout sessions including disclosing information with trust, chance to find

the solution of problems, sharing of secret and internal psychological conflicts,

feeling in a similar situation and working against a common plight, reciprocal giving

and receiving help and support, and helping to deal with unique troubles. Even

though, many studies found that social support was the best predictor of caregiver

burden, the extent of social support availability may determined by the public attitude

24

toward schizophrenia and mental health care service (Adeosun, 2013; Chien et al.,

2007; Grandon et al., 2008; Magliano et al., 1998, 2000). Therefore, the availabilities

of social support from society and health care providers in community settings might

do not fulfill families’ needs.

Summary

In summary, schizophrenia is the neurodevelopmental brain disorder that

affect not only the patients who suffered mental illness, but also the family caregivers

of those patients who may vulnerable to perform the role as caregivers for a long time.

Presently, it has become clear that community-based care needs to focus on family

caregivers rather than only on the patients in order to offer the continuous and

professional mental health care to patients, family, and society. There is a huge

number of literatures about negative caregiving experiences from family caregivers of

patients with schizophrenia and influencing factors, but few studies assess the positive

aspects of caregiving on the burden as well as the attitude toward schizophrenia,

which are important to be considered as the resources of family caregivers, and can be

adjusted to increase their abilities in caring for the patients while affecting their

burden levels. In addition, there were limited studies about burden of family

caregivers of patients with schizophrenia in Indonesia. This emphasized the need to

develop an evidence-base in order to evaluate and improve the mental health service

that given to patients and family caregivers in Indonesia. Furthermore, this underlying

approach will improve the adequacy of mental health care service, especially on

nursing intervention in community settings to understand, support, and fulfill family’s

needs while improving the quality of life of patients with schizophrenia.

CHAPTER 3

RESEARCH METHODOLOGY

A predictive correlation design was used to examine the influence of family

caregivers’ perceived severity of illness of patients with schizophrenia, their

knowledge about schizophrenia, attitude towards schizophrenia, caregiving appraisal,

perceived social support on family caregivers’ burden. This chapter explains research

setting, population and sample, instruments, ethical consideration, data collection

procedures, and data analysis.

Research setting

This study was conducted with family caregivers of patients with

schizophrenia who visited outpatient department of Menur Mental Hospital Surabaya,

Indonesia in January 19 to February 6, 2015. This hospital is located in Menur Street,

Surabaya, Indonesia. This hospital is the class A hospital (the highest rank of hospital

in Indonesia) which delivers health care service both mental health care and general

health care which include emergency care, rehabilitation for drug/ alcohol abuse, and

outpatient department for many specialist areas.

Population and sample

Population

The population in this study was the family caregivers of patients with

schizophrenia who accompanied the patients for follow-up at the outpatient

department. According to hospital record, there were approximately 2,049 patients

with schizophrenia visited this outpatient department in the year 2013.

Sample

Sample in this study was family caregivers of patients with schizophrenia

who are willing to participate in this study and meeting the following inclusion

criteria:

1. Being primary family caregiver for a patient with schizophrenia and take

most responsible for caring the patient for at least 6 months

26

2. Age 17-60 years old

3. Have no cognitive impairment

4. Live in the same household with the patient

5. Able to read and write Indonesian language

Sample size

The sample size in this study was calculated by using Tabachnick and

Fidell’s formula (2007) as follows:

N ≥ 104 + m (where m is a number of independent variables)

Based on this formula, the sample size for this study should be least 109.

In this study, 120 participants were recruited.

Sampling technique

The simple random sampling method was employed. The family caregivers

were randomly selected from the list of the follow-up patients’ names from

the registration unit in the outpatient department in each day. Researcher chose odd

numbers from the list. Eight participants were recruited in each day.

Instruments

In this study, the participants completed the self-report questionnaires

containing as follows:

Demographic Questionnaire

This part was developed by the researcher. It captured data regarding

sociodemographic characteristics of both family caregivers including age, gender,

marital status, education, occupation, income on household, number of family

member household, relationship with patient, duration of providing care (years),

average time of caring (hours/ day), and patients including age, gender, marital status,

education, occupation, duration of illness (the first time diagnosed with schizophrenia

by psychiatrist, in year, data was obtained from medical records), number of inpatient

admission (how many times each patient was hospitalized, data was obtained from

medical records).

The Psychiatric Behavior and Symptom Perception Scale (PBSPS)

This instrument (PBSPS) was used to assess the perception of family

caregivers regarding severity of patients’ illness developed by Pipatananond (2001).

27

Five aspects of illness severity on this instrument consisted of depressive symptoms

(1, 3, 4, 5, 8, 13, 22), inappropriate performance (2, 6, 7, 9, 11, 21, 23, 24, 25, 26),

psychotic symptoms (10, 12, 14, 15, 16), attention and memory problems (17-20), and

addictive behaviors (27-29). This PBSPS was a four-point Likert scale format.

The score for each answer ranged from 0-3 (never, rarely, often, always). The higher

scores indicated more seriousness of the patients’ illness as perceived by the family

caregivers. This instrument was used in the study conducted with Vietnamese

caregivers of patients with schizophrenia (Long, 2011). In this study, the instrument

yielded reliability with the Cronbach’s alpha of .81.

Knowledge Scale (KS)

The simple 7-items of NAMI (National Alliance on Mental Illness) Quiz test

Indonesian version (Adianta et al., 2013) was used to assess the knowledge of family

caregivers about schizophrenia including its definition, cause, symptoms, and

treatment. The incorrect answer would be scored as 0, and the correct answer as 1.

The possible score was 0-7. The higher score indicated better knowledge the family

caregivers have. For this study, the Cronbach’s alpha equaled to .84.

Attitudes Towards Schizophrenia Questionnaire (ATSQ)

This questionnaire was used for assessing various responses that the family

caregivers have regarding schizophrenia and the persons who diagnosed with this

mental disorder. This instrument was developed by Caqueo-Urizar et al. (2011). It

was conducted with family caregivers of patients with schizophrenia in Chile.

The components of this attitude include: cognitive, behavioral, and affective. This

questionnaire comprised 9 items with Likert scale ranging from strongly disagree “1”

to strongly agree “5”. The cognitive component includes item numbers: 4, 7, 9;

behavioral component: 1, 2, 6; and affective component: 3, 5, 8. The total score is

the mean of all items; the higher score indicates a better attitude of the caregiver

toward schizophrenia. The instrument’s reliability Cronbach’s alpha from above study

was .87. For this present study, the Cronbach’s alpha was .73.

Scale for Positive Aspects of Caregiving Experience (SPACE)

This instrument was designed to assess the positive aspects of caregiving

that family caregivers encountered while caring for the patients with schizophrenia.

This instrument was developed by Kate et al. (2012) and was conducted with family

28

caregivers of patients with schizophrenia. This instrument consisted of four factors of

positive aspects in caregiving experience: caregiving personal gains, motivation for

caregiving role, caregiver satisfaction and self-esteem, and social aspect of caring.

A 5-point Likert type scale (never, rarely, sometimes, often, and always) was adopted

to measure their responses to each item. In all, 44 items were retained in the 4-factor

structure: caregiving personal gains which comprised 14 items (7, 17, 18, 19, 20, 21,

27, 29, 30, 31, 32, 33, 34, 35); motivation for caregiving role which had 13 items

(1, 2, 3, 4, 5, 6, 8, 9, 13, 15, 16, 22, 28); caregiver satisfaction consisting of 8 items

(10, 11, 12, 14, 23, 24, 25, 26); and self-esteem and social aspects of caring which

contained 9 items (36, 37, 38, 39, 40, 41, 42, 43, 44). For comparison of different

subscales, the mean score of the subscale is divided with the number of items

included in that subscale to derive the mean scores; the higher means score indicates

higher positive aspects of family caregiving experiences. The instrument had good

psychometric properties with Cronbach’s alpha of .92 (Kate et al., 2012). In this

study, the Cronbach’s alpha was .96.

Personal Resource Questionnaire (PRQ2000)

The PRQ2000 developed by Weinert (2003) was used to assess perceived

social support. The PRQ2000 composed of 15 items on a 7-point Likert scale range

from 1 (strongly disagree) to 7 (strongly agree). The 15 items are summed to calculate

the total score. Possible total scores range from 15 to 105, with higher scores

indicating higher levels of perceived social support. This instrument was used in study

conducted with family caregivers of patients with schizophrenia (Saunders, 1999).

Construct validity was acceptable using factor analysis and the internal consistency of

this instrument for Cronbach’s alpha was .93 (Weinert, 2003). In this study,

the Cronbach’s alpha was .90.

Burden Assessment Schedule (BAS)

In this study, the BAS Indonesian version developed by Djatmiko (2005)

was used. He translated this BAS from English version to Indonesian version. It has

20-items which comprised five domains: impact on well being (question number: 7, 8,

9, 10), impact on marital relationships (3, 4, 5, 6), appreciation of caring (1, 13, 16,

19), impact on relations with others (2, 11, 14, 17), and perceived impact of severity

of the disease (12, 15, 18, 20). Each of questions rated on a 3-point scale,

29

the responses would be “not at all”, “to some extent”, or “very much”. Depending on

the way the questions are framed, the point for each of these responses would vary.

The higher score means higher burden of care. The cut-off point of the instrument is

≥ 22. All items of the BAS Indonesian version had a good validity, the sensitivity

score was 85.1 % while the spesifisity was 89.4 %, and the accuracy were 87.9 %, and

the factor analysis showed that had five underlying construct of their 20 items in line

with of the theoretical construct of the original version of the BAS instrument.

The Cronbach’s alpha score was .87 (Djatmiko, 2005). In this study, the Cronbach’s

alpha was .73.

Translation of the instruments

In order to have appropriate instruments in Indonesian language, all

questionnaires, except the Burden Assessment Schedule and Knowledge Scale, were

translated from English to Indonesian by Back-Translation Technique (Cha et al.,

2007). The translation procedures was used in this study as follows: 1) the original

English version was translated into Indonesian version by the first person who were

fluent in both English and Indonesian, 2) then, the Indonesian version was translated

into English version by the second person who were fluent in both English and

Indonesian, and 3) the two English versions of the instruments (the original and

the back-translation) were reviewed and compared for its equivalence by the third

person.

Ethical consideration

Human subject’s approval was obtained from the Ethical Approval

Committee, Faculty of Nursing, Burapha University, Thailand, and from Menur

Mental Hospital, Surabaya, Indonesia. The study purposes, procedures, benefits, and

safety related to risk of the study were explained. The consent form was reviewed and

signed by the participants. Family caregivers were assured that they had the right to

refuse to participate or withdraw from the study at any time.

Anonymity and confidentiality of family caregivers was assured and no

personal information was disclosed to any other persons. The participants could

withdraw anytime. All data was stored in a secure place and only utilized for

30

the purpose of the research. The result was reported as group data. All data would be

destroyed after one year of end the study.

Data collection procedures

Data collection was conducted after the research proposal was approved by

Ethical Approval Committee of Faculty of Nursing, Burapha University, Thailand.

A letter from the Dean of Faculty of Nursing, Burapha University was sent to director

of Menur Mental Hospital Surabaya, Indonesia to ask permission for data collection.

After receiving permission, the researcher met the head of outpatient department and

the psychiatrist in order to inform them about the study’s details. The procedures for

data collection were as follows:

1. Researcher met the family caregivers when they were either waiting for

the call to see the psychiatrists or receive the prescribed medication.

2. Researcher introduced herself to the family caregivers, informed them

about purposes, method, procedures, and benefits of this study, and ensured family

caregivers were understood clearly before they signed the informed consent.

3. Researcher collected data by asking the participants to fill

the questionnaires by themselves in a private room. It took about 30-45 minutes to

complete all questionnaires. The patients were waiting in the waiting area of

the outpatient department that has the staff who looked on them.

4. Duration for data collection last for one month. It was conducted during

weekday starting from 7 am to 1 pm at outpatient department of Menur Mental

Hospital Surabaya.

5. After completing the questionnaires, researcher checked for

the completeness.

Data analysis

All data was analyzed by statistical software. The alpha level of statistical

significance was set at .05. Details for data analysis are as follows:

1. Descriptive analysis including frequency, percentage, mean (M), and

standard deviation (SD) were used to describe demographic data of both the family

31

caregivers and the patients, family caregivers’ perceived severity of illness,

knowledge about schizophrenia, attitude towards schizophrenia, caregiving appraisal,

perceived social support, and burden of family caregivers of patients with

schizophrenia.

2. Standard multiple regression analysis was used to determine

the predictors of burden which include family caregivers’ perceived severity of

patients’ illness, knowledge about schizophrenia, attitude towards schizophrenia,

caregiving appraisal, and perceived social support among the family caregivers of

patients with schizophrenia.

CHAPTER 4

RESULTS

This chapter presents the results of study including 1) description of patients

and family caregivers’ characteristics, 2) description of the study variables, and

3) predicting factors of family caregivers’ burden.

Description of patients and family caregivers’ characteristics

Demographic characteristics of patients

The patients had a mean age of 37.69 (± 12.69) years and were more males

(55.80 %) than females (44.20 %). The majority of them were single (66.70 %) and

unemployed (78.40 %). The mean score of duration of illness, and number of

inpatient admission were 9.52 (± 7.81) years, and 2.37 (± 2.14) times, respectively

(Table 1).

Table 1 Demographic characteristics of patients (n = 120)

Characteristics n %

Age

≤ 20 5 4.20

21-30 35 29.20

31-40 41 34.20

41-50 18 15.00

51-60 13 10.80

> 60 8 6.60

M = 37.69; SD = 12.69; Range = 17-73

Gender

Male 67 55.80

Female 53 44.20

33

Table 1 (Continued)

Characteristics n %

Marital status

Single 80 66.70

Married 32 26.70

Divorced 8 6.60

Education

Not finished primary school 2 1.70

Primary school 36 30.00

Secondary school 33 27.50

High school 46 38.30

Undergraduated/ Graduated 3 2.50

Occupation

Unemployed 94 78.40

Housewife 7 5.80

Retired 1 0.80

Government employee 1 0.80

Private company employee 7 5.80

Farmer 2 1.80

Business 0 0.00

Others 8 6.60

Duration of illness (years)

1-10 75 62.00

11-20 33 27.00

21-30 12 11.00

M = 9.52; SD = 7.81; Range = 1-30

Number of inpatient admission

< 5 105 87.00

≥ 5 15 13.00

M = 2.37; SD = 2.14; Range = 0-10

34

Demographic characteristics of family caregivers

The demographic characteristics of family caregivers of patients with

schizophrenia are shown in Table 2. The family caregivers had a mean age of 48.81

(± 10.78) years and were more females (72.50 %) than males (27.50 %), and being

housewives (52.50 %). The majority of them were married (90.00 %) and completed

primary school (40.00 %). About half of them are parents of the patients (50.80 %).

The mean score of income on household, number of family member, duration of

providing care, and average time of caring per day were 2,080.00 thousand

IDR/ month, 3.85 (± 1.58), 7.52 (± 7.58) years, and 4.53 (± 3.99) hours/ day,

respectively.

Table 2 Demographic characteristics of family caregivers (n = 120)

Characteristics n %

Age

≤ 20 1 0.80

21-30 9 7.50

31-40 17 14.20

41-50 30 25.00

51-60 63 52.50

M = 48.81; SD = 10.78; Range = 19-60

Gender

Male 33 27.50

Female 87 72.50

Marital status

Single 9 7.50

Married 108 90.00

Divorced 3 2.50

35

Table 2 (Continued)

Characteristics n %

Education

Not finished primary school 1 0.80

Primary school 48 40.00

Secondary school 11 9.20

High school 44 36.70

Undergraduated/ Graduated 16 13.30

Occupation

Unemployed 7 5.80

Housewife 63 52.50

Retired 6 5.00

Government employee 2 1.70

Private company employee 21 17.50

Farmer 5 4.10

Business 2 1.70

Others 14 11.70

Relationship with patient

Spouse 15 12.50

Parent 61 50.80

Son/ daughter 9 7.50

Sibling 31 25.80

Uncle/ aunt 2 1.70

Other 2 1.70

Income on household (IDR/ month)

≤ 2,000,000 57 47.50

> 2,000,000 38 31.70

Not specified 25 20.80

M = 2,080,000.00 (Approximately 175 USD); Median =

2,000.00; Range = 500,000-4,500,000

36

Table 2 (Continued)

Characteristics n %

Number of family members

< 6 106 88.30

≥ 6 14 11.70

M = 3.85; SD = 1.58; Range = 2-13

Duration of providing care (years)

1-10 91 75.80

11-20 21 17.50

21-30 8 6.70

M = 7.52; SD = 7.58; Range = 1-30

Average time of caring (hours/ day)

1-12 114 87.50

13-24 6 12.50

M = 4.53; SD = 3.99; Range = 1-20

Description of the study variables

The mean score of perceived severity of patients’ illness, knowledge about

schizophrenia, attitude towards schizophrenia, caregiving appraisal, perceived social

support, and family caregivers’ burden were 12.23 (± 8.16), 4.27 (± 2.12), 31.21

(± 4.49), 143.54 (± 26.06), 75.88 (± 11.02), and 24.76 (± 4.09), respectively (Table 3).

From 120 family caregivers, 93 (77.50 %) of them perceived burden.

Table 3 Description of the study variables (n = 120)

Variables M SD Actual

score

Possible

score

Perceived severity of patients’ illness 12.23 8.16 0-30 0-87

Inappropriate performance 4.78 3.13 0-12 0-30

37

Table 3 (continued)

Variables M SD Actual

score

Possible

score

Depressive symptoms 3.92 3.20 0-14 0-21

Psychotic symptoms 2.47 2.16 0-11 0-15

Attention and memory problems 1.03 1.63 0-9 0-12

Addictive behaviors 0.03 0.22 0-2 0-9

Knowledge about schizophrenia 4.27 2.12 0-7 0-7

Attitude towards schizophrenia 31.21 4.49 19-40 9-45

Behavioral 10.87 1.69 5-15 3-15

Cognitive 10.45 2.04 4-15 3-15

Affective 9.88 2.25 3-14 3-15

Caregiving appraisal 143.54 26.06 82-216 44-220

Caregiving personal gains 43.94 8.81 24-67 14-70

Motivation for caregiving role 37.52 9.13 18-62 13-65

Self-esteem & social aspects of

caring 35.13 5.69 18-45 9-45

Caregiver satisfaction 24.55 5.64 12-39 8-40

Perceived social support 75.88 11.02 51-95 15-105

Family caregivers’ burden 24.76 4.09 16-36 16-60

Appreciation of caring 8.13 1.34 4-12 4-12

Impact on well-being 5.48 1.55 1-11 4-12

Perceived impact of severity of

disease 5.19 1.43 4-10 4-12

Impact on relationship with others 4.96 1.28 3-9 4-12

Impact on marital relationship 1.01 2.77 0-10 4-12


Table 4 showed the correlations among the variables including family

caregivers’ burden, perceived severity of patients’ illness, knowledge about

38

schizophrenia, attitude toward schizophrenia, caregiving appraisal, and perceived

social support.

Table 4 Correlations among the study variables (n = 120)

Variables 1 2 3 4 5 6

Family caregivers’ burden 1

Perceived severity of patients’ illness .38*** 1

Knowledge about schizophrenia -.15* .16* 1

Attitude towards schizophrenia -.53*** -.01 .14 1

Caregiving appraisal -.33*** -.04 .13 .33*** 1

Perceived social support -.45*** .06 .19* .42*** .45*** 1

*p < .05, ** p < .01, *** p < .001

Table 5 presented the result of standard multiple regression analysis that

indicated perceived severity of patients’ illness, knowledge about schizophrenia,

attitude towards schizophrenia, caregiving appraisal, and perceived social support

significantly explained 51 % of the variance in family caregivers’ burden on family

caregivers’ burden (R2 = .51, F(5, 114) = 24.07, p < .001).

Table 5 Predicting factors of burden among Indonesian family caregivers (n = 120)

Variables b SE β t Perceived severity of patients’ illness .20 .03 .41*** 6.14

Attitude towards schizophrenia -.35 .07 -.38*** -5.19

Perceived social support -.10 .03 -.27** -3.47

Knowledge about schizophrenia -.20 .13 -.10 -1.56

Caregiving appraisal -.01 .01 -.05 -.68

Constant = 42.76***; R2 = .51; F(5, 114) = 24.07***

*p < .05, ** p < .01, *** p < .001

CHAPTER 5

CONCLUSION AND DISCUSSION

This chapter presents a summary and discussion of the study results.

Implications of the finding for nursing, limitation of study, and recommendations for

future research are addressed.

Summary of the findings

A sample of 120 family caregivers of patients with schizophrenia was

recruited from the Outpatient Department of Menur Mental Hospital Surabaya,

Indonesia during January 19 to February 6, 2015. The data were obtained by self-

report questionnaires which include sychiatric Behavior and Symptom Perception

Scale, Knowledge Scale, Attitude Towards Schizophrenia Questionnaire, Scale for

Positive Aspects of Caregiving Experience, Personal Resource Questionnaire

(PRQ2000), and Burden Assessment Schedule. The study findings can be summarized

as follows: Patients and family caregivers’ characteristics

Patients with schizophrenia who visited the hospital with their family

caregivers had a mean age of 37.69 (± 12.69) years. There were more males

(55.80 %) than females (44.20 %). The majority of them were single (66.70 %) and

unemployed (78.40 %). The mean score of duration of illness, and number of

inpatient admission which retrieved from medical records were 9.52 (± 7.81) years,

and 2.37 (± 2.14) times, respectively.

The family caregivers had a mean age of 48.81 (± 10.78) years and were

more females (72.50 %) than males (27.50 %) and being as housewives around

52.50 %. The majority of them were married (90.00 %) and completed primary school

(40.00 %). About half of them are parents of the patients (50.80 %). They are live in

the same household with the patients, and some of them also live with another family

member. There were 106 (88.30 %) respondents live with 2-5 family members, and

14 (11.70 %) respondents live with 6-13 family members (included the patient).

The mean score of income on household, duration of providing care, and average time

40

of caring were 2,080,000.00 thousand IDR/ month (approximately 175 USD), 7.52

(± 7.58) years, and 4.53 (± 3.99) hours/ day, respectively.

The study variables

Perceived severity of patients’ illness had a mean score 12.23 (± 8.16).

Among its aspects, inappropriate performance had the highest mean score of 4.78

(± 3.13), and four aspects order consecutively were depressive symptoms 3.92

(± 3.20), psychotic symptoms 2.47 (± 2.16), attention and memory problems 1.03

(± 1.63), and addictive behaviors 0.03 (± 0.22). Attitude towards schizophrenia had

a mean score of 31.21 (±4.49) which behavioral components had the highest mean

score of 10.87 (± 1.69), followed by cognitive, and affective components, these mean

scores were 10.45 (± 2.04), and 9.88 (± 2.25), respectively. Caregiving appraisal had

a mean score of 143.54 (± 26.06) which caregiving personal gains was the highest

among the positive experience factors with the means score of 43.94 (± 8.81), and

the mean score of motivation for caregiving role, self-esteem and social aspects of

caring, and caregiver satisfaction were 37.52 (± 9.13), 35.13 (± 5.69), and 24.55

(± 5.64), respectively. The mean score of knowledge about schizophrenia, and

perceived social support were 4.27 (± 2.12), and 75.88 (± 11.02), respectively.

Family caregivers’ burden had a mean score of 24.76 (± 4.09), and mean

score of the five consecutive domains were appreciation of caring 8.13 (± 1.34),

impact on well-being 5.48 (± 1.55), perceived impact of severity of the disease 5.19

(± 1.43), impact on relationship with others 4.96 (± 1.28), and impact on marital

relationship 1.01 (± 2.77).


The results of standard multiple regression test shows that perceived severity

of patients’ illness (r = .38, p < .001, β = .41, p < .001), knowledge about

schizophrenia (r = -.15, p < .05, β = -.10, p > .05), attitude towards schizophrenia

(r = -.53, p < .001, β = -.38, p < .001), caregiving appraisal (r = -.33, p < .001,

β = -.05, p > .05), and perceived social support (r = -.45, p < .001, β = -.27, p < .01)

accounted for 51 % of the family caregivers’ burden scores (R2 = .51, F(5, 114) = 24.07,

p < .001).

41

Discussion

Description of the study variables

The first aim of this study was to describe the burden of family caregivers of

patients with schizophrenia in Surabaya, Indonesia. Among 120 family caregivers, 93

(77.50 %) of them reported burden. The studies which conducted in Indonesia found

that almost of 120 caregivers (95 %) in Bali Province (Adianta et al. (2013), 89 from

100 caregivers (89 %) in Semarang (Fitrikasari et al., 2012), and 87 from 118

caregivers (74 %) in North Sumatra Province (Ratnawati et al., 2014) felt burden by

the condition of patients with schizophrenia. It is similar with another countries that

family caregivers perceived burden which reflected the negative consequences in

caring for patients with schizophrenia (Baronet, 1999; Caqueo-Urizar et al., 2014;

Chan, 2011; Pratima et al., 2011). Eighty-nine (73.5 %) Arab family caregivers of

patients with schizophrenia rated their burden of care as “fairly-very” heavy (Zahid &

Ohaeri, 2010). Only 43 (12 %) caregivers in Canada reported no subjective burden

during caring for the patients (Ricard et al., 1999).

The patients have been suffering with this disease for a long time, hence

the family caregivers would face various problems and difficulties toward caring for

them, and these would impact to their emotions. These negative consequences include

financial difficulties, missed work, disturbance of domestic routines, constraints on

their social and leisure activities, and reduced attention paid to other family members,

in consequence, psychological distress may occur as well such as guilt, loss,

helplessness, fear, vulnerability, and cumulative feelings of defeat, anxiety,

resentment, and anger. The distress mentioned above was commonly reported in other

studies (Balasubramanian, 2013; Caqueo-Urizar et al., 2014). As covered in this

study, using Burden Assessment Schedule instrument to assess the five consecutive

domains of burden (range of each subscale was 4-12), there were appreciation of

caring (M = 8.13), impact on well-being (M = 5.48), perceived impact of severity of

the disease (M = 5.19), impact on relationship with others (M = 4.96), and impact on

marital relationship (M = 1.01).

The impairments of schizophrenia lead to many psychiatric symptoms,

disturbed behaviors, and limited functional ability (Herzog, 2014). As rated by family

caregivers in this study, the average score for total severity of patients’ illness over

42

the past few weeks was 12.23 (0-87). It confirms that the condition of patients at

home after receiving the treatment in hospital was not so serious, thus the Indonesian

family caregivers were able in doing the household daily activities. Same reported in

other study that 76 (67.3 %) caregivers perceived the patients’ mental status at home

were stable, 21 (13.3 %) caregivers perceived it was worse, and 15 (13.3 %)

caregivers perceived it was improved (Papastavrou et al., 2010). By using

the Psychiatric Behavior and Symptom Perception Scale in this study,

the ‘inappropriate performance’ was a highest of the aspects (M = 4.78, range of

0-30) that family caregivers evaluated how the appearance of patients. The next

aspects were ‘depressive symptoms’ (M = 3.92, range of 0-21), followed by psychotic

symptoms (M = 2.47, 0-15), attention and memory problems (M = 1.03, 0-12), and

addictive behaviors (M = 0.03, 0-9). In comparison with the reported by the family

regarding the amount of the patients’ symptoms, the mean score for the subscale

‘disorganised symptomatic behavior’ was 3.5 (range of 0-45), for the ‘negative

symptomatic behavior’ was 4.19 (0-24), and the ‘depressive symptomatic behavior’

was 2.13 (0-15) (Lowyck et al., 2004).

Knowledge about schizophrenia in this study focused on the extend of

family caregivers’ understanding about the disorder. The majority of the family

caregivers in this study have moderate (40.00 %), and high levels (35.80 %).

The study that conducted in Indonesia and used same instrument with this present

study confirmed good results as well regarding the level of family caregivers’

knowledge about schizophrenia (Adianta et al., 2013). They stated that the result was

consistent with the education level of the caregivers. However, in this present study,

the most education level of family caregivers were primary school (40.00 %) and high

school (36.70 %). It has some factors related to the learning process of someone.

In this case, the family caregivers may get information regarding schizophrenia

toward the advance of technology. Today is easy for searching any information

whether by internet or television, newspaper, radio, and leaflet. Therefore, the family

caregivers somehow increase their knowledge about schizophrenia. In addition,

the psychoeducational intervention for the family caregivers is helpful to increase

their understanding and skill.

43

The understanding about schizophrenia could also influence the attitude

concerning beliefs, opinions, and ideas about schizophrenia which in influence their

reactions to the patients with schizophrenia. From the answers by the respondents in

this present study regarding the statements of affective component, there were 58.4 %

of these respondents indicated pleasant feelings toward patients with schizophrenia.

It showed that Indonesian family caregivers somehow reported good attitude toward

schizophrenia. They are more likely to accept the patients as their family members

although the stigma toward mental illness in society is existed. The finding was same

with the caregivers of schizophrenia patients in Port Moresby, Papua New Guinea,

these caregivers accepted their patients as part of their family members and accepted

their obligation to care for them (Magaru, 2012). Similar finding with the study

conducted with Chinese family caregivers of patients with schizophrenia revealed

a strong sense of obligation to caring for the patients (Chien et al., 2004).

Caring for the patients with schizophrenia for a long period of time would

impact to any negative feelings as the consequences of caregiving, but some family

caregivers may value the caregiving somewhat as worthwhile experience. In this

study, the mean score of caregiving appraisal was 143.54 (range of 44-220), indicated

that the Indonesian family caregivers are more likely to experience some positive

aspects of caregiving regarding their caregiving personal (M = 43.94, range of 14-70),

motivation as caregivers (M = 37.52, range of 13-65), self-esteem and social aspects

(M = 35.13, range of 9-45), and satisfaction of caregiving (M = 24.55, range of 8-40).

The findings were consistent with the report of the caregivers that they enjoy the time

they spent with their spouse, the chance to grow closer to the care receiver,

the intimacy of personal care, and the sense of being needed and appreciated; and

others feel that caregiving provides opportunities for being creative about problem

solving (Bearon, 2013). Forty-five percent caregivers reported that they were a more

religious or spiritual person because of their caregiving experience (Donelan et al.,

2002). These findings may relate to the reward of caregiving that the family

caregivers felt, and as the key to understanding why some families cope the negative

consequences of caregiving better than other families (Heru, 2000).

The mean score of perceived social support in this study was 75.88

(± 11.02). It describes how large of support that Indonesian family caregivers

44

perceived in terms of having patients with schizophrenia and caring the patients at

home. The family caregivers might be supported by their own family as the data on

this study showed 106 (88.3 %) of them have 2-6 family members on household.

They are sharing and giving help to each others. They might also have the second

family caregivers to help the primary in caring for the patients at home. Another

reason is Indonesian people are pleasant to share their experience openly with those in

similar difficult situations and/ or with those who have experience in resolving

the problems. In addition, the family caregivers may also seek help from health

professions.


The last aim of this study was to examine the predicting factors of

Indonesian family caregivers’ burden. Standard multiple regression analysis showed

that perceived severity of patients’ illness, knowledge about schizophrenia, attitude

towards schizophrenia, caregiving appraisal, and perceived social support

significantly explained 51 % of the variance in family caregivers’ burden (R2 = .51,

F(5, 114) = 24.07, p < .001). The most variance that explained in family caregivers’

burden was perceived severity of patients’ illness (β = .41, p < .001), followed by

attitude toward schizophrenia (β = -.38, p < .001), and perceived social support

(β = -.27, p < .01). Each of predictors were explained and ordered by the most

variance in family caregivers’ burden.

Clinical characteristic of patients that rated by family caregivers had

a significant impact on family caregivers’ burden (β = .41, p < .001). The results

showed consistent results with other studies as well (Hasui et al., 2002; Koukia &

Madianos, 2005; Long, 2011; Lowyck et al., 2004; Papastavrou et al., 2010; Zahid &

Ohaeri, 2010). As study in Chile which found positive symptoms of the patients with

schizophrenia (β = .19, p < .01) and independence-performance of the patients

(β = -.62, p < .001) significantly influenced the caregivers’ burden (Grandon et al.,

2008). These findings demonstrated what have been faced by the family caregivers

during their care for patients with schizophrenia at home. The acute episodes of

schizophrenia could appear again after receiving inpatient service from hospital.

In addition, the more severe of the illness, the more limitation regarding patients’

abilities to perform their daily activities on their own as well as their interaction with

45

others people. Therefore, the more severe of patients’ illness perceived by the family

caregivers, the higher level of burden they felt. The assessment of functional ability

and symptoms of the patients are not only reflected the condition of patients, but also

serve as helpful information for the health care provider to predict the family

caregivers’ burden. Moreover, the effective treatment for the patients to improve their

functioning abilities and reduce psychotic symptoms would result in the decrease of

burden of family caregivers.

From this study, the family caregivers’ attitude toward schizophrenia

significantly influenced the burden of family caregivers (β = -.38, p < .001).

According to attitude scale examined in this study, the higher score indicate a positive

or better attitude of the family caregiver toward schizophrenia. The finding was

consistent with the study conducted by Caqueo-Urizar et al. (2011) which showed that

the perceived burden of family caregivers is significantly correlated with their attitude

toward schizophrenia; the worse attitude the caregivers had, the higher level of burden

they would perceive (R2 = .104, F = 4.55; p < .05). The sociocultural and ethnic

characteristics of the family caregivers across countries have influence their attitude

toward the patients with schizophrenia which in turn impact to their burden of

caregiving. The family in Asia appraise more likely the family accountability, rely on

each other family members for their living, and more likely to be interdependence

rather than independence; therefore, the one whose interdependence level is high

would has less burden (Suro & Mamani, 2013). The survey with United States

citizens discovered that the respondents (80 %) acknowledge being uncomfortable

dating or working for people with schizophrenia, although the caregivers of people

with schizophrenia would like to share to friends (89 %) or family (79 %) about their

caregiving responsibilities (NAMI, 2008). These findings might exhibit the attitude

toward schizophrenia as a noticeable predictor factor of burden, and as an explanation

of the differences of burden between family caregivers of patients with schizophrenia

in eastern and western countries through sociocultural and ethnic characteristics.

Consistent with various studies which found that the social support was

the best predictor of caregiver burden (Adeosun, 2013; Chien et al., 2004; Grandon et

al., 2008; Magliano et al., 1998, 2000), this study also showed similar results

(β = -.27, p < .01). The study conducted with Chinese families showed social support

46

significantly explained the variance in family caregivers’ burden (β = -.39, p < .05)

(Chien, et al., 2007). These results confirm that the family caregivers need any help

and support to deal with any negative consequences in caring for the patients with

schizophrenia. For example when the patients are in acute episode, they need other

family members or neighbour or friends to keep the patients stable. Another situation

is if the family caregivers need to go to work, thus they need secondary caregiver or

someone who could take their roles for a while. As reported by the family in

the study, those who perceived having family support seemed less disturbed by

the patients’ disruptive behaviors than those who perceived the lack of social support

(Rose et al., 2006). These social supports provide opportunities for the family to

maintain both their needs as well as their roles as caregivers.

Understanding the nature of patients’ disease regarding the cause,

symptoms, and treatment would influence the burden that the family caregivers would

perceive. Even though family caregivers’ knowledge about schizophrenia had

negative correlation with burden (r = -.15, p < .05), this variable failed to reach

the significance level in regression model (β = -.10, p > .05). The possible reason is

the instrument of this variable in this study did not capture the knowledge of family

caregivers regarding how do they manage the patients’ behaviors and symptoms or

the needed skills for coping the symptoms at home. As the result of study that

conducted psychoeducational intervention among family caregivers of patients with

schizophrenia, there were improvement in the patients’ clinical status and decreases in

family burden that related to the caregivers’ understanding of strategies for dealing

with daily problematic situations (Sharif et al., 2012). Nevertheless, simply stated that

the higher level of knowledge about schizophrenia the family caregivers have,

the lower level of burden they would perceive. However, some studies showed

opposite results in which the greater level of knowledge about schizophrenia,

the greater burden they would perceive (Adianta et al., 2013; Sefasi et al., 2008).

The authors stated that if the caregivers know about the disease, the caregivers would

consider that it cannot be cure and they are responsible to continue caring for

the patients for a long period of time, thus it leads to increase their burden. For

the study of Lim and Ahn (2003), the path analysis revealed that family caregivers’

knowledge had no direct effect on the burden of family caregivers, but it had

47

an indirect impact (β = -.31) on subjective burden through negative coping (β = .34)

style of family caregivers (total effect = -.11). Based on the above mentioned study,

the coping style was served as a mediator for the relationship between family

caregivers’ knowledge regarding schizophrenia and the perceived burden that

the family caregivers had. These findings affirmed that family caregivers are still

looking forward to receive necessary information about schizophrenia in order to

adjust their care given to the patients as well as learn how to cope and manage with

patients’ behaviors and symptoms. Hence, obtaining better knowledge and

understanding toward schizophrenia and care management should be prioritized to

alleviate the family caregivers’ burden.

Another variable on this study which failed to reach significant level in

regression model was caregiving appraisal (r = -.33, p < .001, β = -.05, p > .05).

The study from Kate et al., (2013 a) found that only caregiver’s gain in positive

experience on SPACE (Scale for Positive Aspects of Caregiving Experience)

positively influences subjective burden. On the other hand, the study of Hsiao and

Van Riper (2008), Taiwanese family caregivers who had more positive interpretation

of caregiving reported lower levels of their burden during their care for the patients

with severe and persistent mental illness (β = -1.05, p < .001). The findings revealed

that when the family caregivers experienced some positive aspects of caregiving such

as learning new skill of caregiving, enhance sense of meaning, increase self-esteem,

feeling needed and appreciated; those feelings somehow influence their perception of

any adverse effects of caring for the patients with schizophrenia. For example,

the feeling needed and appreciated by the patients might press the family caregivers at

the time they realized that schizophrenia is chronic illness. However, it is suggested

that over time, the family caregivers can learn more and adapt to attain the positive

experience of caregiving rather than involve on the negative consequences of

caregiving for the patients with schizophrenia (Huang et al., 2009). Moreover,

the sociocultural and ethnic characteristics of the family caregivers could influence

the way they appraise the positive aspects of caregiving. Indonesian family caregivers

have various ethnics and beliefs toward care given to the patients with schizophrenia.

It might be one of the possible reasons that even though they have been getting

positive experience during caring for the patients regarding caregiving personal gains,

48

motivation for caregiving role, caregiver satisfaction and self-esteem, and social

aspects of caring; they felt negative emotions during caring for the patients.

Nevertheless, from this study results, the researcher confirms that successful

family caregivers in fulfill the demands of caregiving for patients with schizophrenia

requires the adjustments on their capabilities in providing care including how severe

they perceive toward the severity of patients’ illness, how their concerns about

the patients and the disease, and how wide the social support they needs; thereby

assist them to deal with the negative consequences of caring. The family caregivers

would feel overwhelmed in caring because of the patients have more severe illness or

unable in doing daily activities, and they may have no idea of the patients’ symptoms

and what should they do to face it. However, when they endorse good attitude toward

shizophrenia, they would view the situation in different way which involve positive

aspects of caregiving experience. Contrary if they have bad feelings toward

the patients and the disease, the more burden they would perceive. The burden would

be influenced as well by the support from other family members, friends, society, and

health care professions that they have. Therefore, these findings in advance would

help the family caregivers to be able to cope the negative consequences during caring

for the patients with schizophrenia as more acceptable and worthy without neglect

their own needs and health.

Implications for nursing

The results of this study provided better understanding about the conditions

of Indonesian family caregivers of patients with schizophrenia during their care for

the patients at homes. The study results shed addition light of how Indonesian family

caregivers perceived about the negative consequences in providing care for

the patients with schizophrenia, how they perceived the severity of patients’ illness,

their knowledge and attitude, their positive experience of caregiving, and how they

perceived the help or support from other people. This information would help nurses

to do in-depth assessment and develop proper interventions for the patients and family

caregivers in order to improve the functioning abilities of the family caregivers as

well as the patients by enhancing family caregivers’ skills to be more effective in

49

caring for the patients and also for themselves. This study results could reinforce to

delivery suitable and adequate mental health services for the patients and family

caregivers in community setting in Indonesia. The findings also contribute to nursing

research by serving as an evidence-based findings regarding the predicting factors of

Indonesian family caregivers’ burden, and as a reference and baseline data for further

research relevant to family caregivers of patients with schizophrenia.

Limitation of study

One of limitations of this study is related to cross-sectional design since

the burden of family caregivers are changed over time, therefore the data that

collected on multiple times or longitudinal would be more suitable to fully depict

the nature of variables. Another limitation is the setting of data collection. This study

was conducted from only one hospital. Although the hospital is the largest mental

hospital located in Surabaya, Indonesia, it may limit generalization of the study

findings.

Recommendation for future research

Future research should be in longitudinal design to explore the relationships

among variables, and/ or experimental design to examine the effectiveness of

intervention in order to reducing the family caregivers’ burden as the consequences of

caring for patients with schizophrenia. More than one setting of data collection is

recommended to get close on generalization of the findings. In addition, in

consideration of assessing family caregivers’ burden, this study relied on subjective

report by the family caregivers, using other sources of investigation to explore burden

is also recommended.

Conclusion

Family caregivers of patients with schizophrenia in Surabaya, Indonesia

reported burden (77.50 %) during providing care for the patients at home. Their

burden were predicted by their perceived severity of patients’ illness, attitude towards

schizophrenia, and perceived social support with explanation 51 % of the variance

50

(R2 = .51, F(5, 114) = 24.07, p < .001). Understanding the characteristics of and the way

of care provided by the family caregivers of patients with schizophrenia should not be

viewed as an attempt to reflect negative views among family caregivers, but rather

provide objective information that is helpful in determining how we can alleviate

distress among the family caregivers as well as how we can do to improve both

the patients’ functioning abilities and the family caregivers’ resources, particularly

among those family caregivers in need of support or have limited access to health care

services.

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http://www.wfmh.org/

http://www.wfmh.org/

http://www.who.int/iris/bitstream/10665/112829/1/9789241506816_eng.pdf

http://www.who.int/mental_health/management/schizophrenia/en/

APPENDICES

62

APPENDIX A

Informed Consent

63

PARTICIPANT’S CONSENT FORM

Dear Sir/Madam,

My name is Faida Annisa, a student at Faculty of Nursing, Burapha

University, Thailand. I am doing a research with title “Predicting factors of burden

among family caregivers of patients with schizophrenia in Surabaya, Indonesia” with

regard to complete a requirement for my master program. The study aims to examine

the burden and its predicting factors. The finding of this study will provide the useful

knowledge for nurses and family of patients with schizophrenia, to improve your role

as caregiver for patient with schizophrenia while keep your psychological healthy.

I would like to ask your participate on this study by filling the questionnaires

for 45-60 minutes about your and the patient demographic data, perceived severity of

patient’s illness, knowledge about schizophrenia, attitudes toward schizophrenia,

caregiving appraisal, perceived social support, and burden. All pieces of information

collected from you will be kept confidential by the researcher and be used only for

purpose of this study. Your name will not be presented, all the data collection forms

are anonymous.

Participation in this study is voluntary and you absolutely have the right to

refuse or stop evolving in this study at any time for any reason. You also may refuse

to answer any specific questions without explanations. This study is completely

separated from any treatment for the patients and you, and your refusal to participate

in this study will not affect the treatment now and in the future. If you have any

question or need more information, please feel free to contact me, Faida Annisa,

phone number 0819 3868 3696 or email [email protected], and contact my

advisor Assist. Prof. Dr. Pornpat Hengudomsub by email [email protected]

Your cooperation is greatly appreciated.

Faida Annisa

Surabaya, . . . . . . . . . . . . . . 2015

mailto:[email protected]


64

INFORMED CONSENT

Title: Predicting factors of burden among family caregivers of patients with

schizophrenia in Surabaya, Indonesia

Ethical Approval number: 01 – 12 – 2557

Date of collection data . . . . . . . . . . . . . . . . . 2015

Before I give signature in below, I was already be informed and explained from Ms.

Faida Annisa about purposes, method, procedures, and benefits of this study, and I

understand all of that explanations. I agree to be a participant of this study.

I am Ms. Faida Annisa as a researcher had explained all of explanations about

purposes, method, procedures, and benefits of this study to the participant with

honestly; then, all of informations of the participant will only be used for purpose of

this study.

Signature of the participant : . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Signature of the researcher : . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

65

APPENDIX B

Instruments (English version)

66

Demographic Questionnaire

Sociodemographic characteristics of patient

1. Age: . . . . . . . . . . . years

2. Gender:

Male Female

3. Marital status:

Single

Married

Divorced

4. Education:

Not finished primary school

Primary school

Secondary school

High school

Undergraduated/ Graduated

5. Occupation:

Unemployed Private company employee

Housewife Farmer

Retired Business

Government employee Others (specify) . . . . . . . . . . . . .

6. Duration of illness (from medical records): . . . . . . . . . . . . . year(s)

7. Number of admission (from medical records): . . . . . . . . . . . . time(s)

67

Sociodemographic characteristics of family caregiver

1. Age: . . . . . . . . . . . years

2. Gender:

Male Female

3. Marital status:

Single

Married

Divorced

4. Education:

Not finished primary school

Primary school

Secondary school

High school

Undergraduated/Graduated

5. Occupation:

Unemployed Private company employee

Housewife Farmer

Retired Business

Government employee Others (specify) . . . . . . . . . . . . .

6. Income on household: . . . . . . . . . . . . . . IDR/ month

7. Number of family member household: . . . . . . . . . . . . . . person(s)

8. Relationship with patient:

Spouse Cousin

Father / Mother * Uncle / Aunt *

Son / Daughter * Others (specify) . . . . . . . . . .

Sibling

9. Duration of providing care: . . . . . . . . . . . . year(s)

10. Average time of caring (excluded patient’s sleep time): . . . . . . . hours/ day

* Choose one

68

The Psychiatric Behavior and Symptom Perception Scale (PBSPS)

Below are list of psychiatric behavior and symptoms of patient with

schizophrenia. Please choose and circle the frequency of each list that you perceive

the patient has it over the past few weeks.

0 Never 1 Rarely 2 Often 3 Always

No Behavior and symptoms 0 1 2 3

1 Taking inadequate care of him/herself

2 Eating too much or too little

3 Sleeping too much or too little

13 Feeling miserable or worthless

14 Having misbeliefs

15 Having hallucination

69

No Behavior and symptoms 0 1 2 3

27 Drinking alcohol or energy drinks

28 Being addicted to drugs

29 Being addicted to medicines

70

Knowledge Scale (KS)

Below are some questions about schizophrenia. Please choose and circle the

answer that you think is the best one. Try to answer as best as you can.

1. Schizophrenia is:

a.

b. A serious medical illness that interferes with a person’s ability to interpret

reality

c.

2. The cause(s) of schizophrenia is/are:

a. A traumatic childhood event

b.

c.

d. There is no one particular cause for schizophrenia, but the illness is

believed to be caused by a combination of genetic vulnerability and

external environmental factors

3. To be diagnosed with schizophrenia:

a. A person must claim to hear voices in their head

b.

c.

d. Psychotic or loss-of-reality symptoms are observed for at least six months

4. Schizophrenia is characterized by:

a. Hallucinations

b.

c.

d. All of the above

71

5. People with schizophrenia:

a. Outlive those who are healthy

b.

c. Live about the same amount of time as people without schizophrenia

6. People with schizophrenia are no more likely to be violent than the general

population.

a. True

b. False

7. Schizophrenia is a brain disease that can easily be cured by a treatment plan

that includes different combinations of medications.

a. True

b. False

72

Attitudes Towards Schizophrenia Questionnaire (ATSQ)

Below are a series of statements. Please choose and circle the answer that

best describes your opinion. Try to answer as honestly as possible and remember that

the information is strictly confidential.

Example:

Work should be well paid 1 2 3 4 5

All TV programmes are good 1 2 3 4 5

1 I Strongly Disagree 4 I Agree

2 I Disagree 5 I Strongly Agree

3 I Don’t Know

No Statements 1 2 3 4 5

1 I avoid engaging in conversation with my

disturbed relative

2 When he/she becomes rude, I am aggressive with

him/her

5 I prefer to hide the illness from the rest of my

family and friends

8 I don’t like to talk with anybody about the things

that happen to my relative

9 My relative’s disturbance will worsen over time

73

Scale for Positive Aspects of Caregiving Experience (SPACE)

Below are some statements about positive aspects of caregiving experiences.

Please choose and circle the answer that best describes your experiences during caring

for patients with schizophrenia. Try to answer as honestly as possible and remember

that the information is strictly confidential.

1 Never 4 Often

2 Rarely 5 Always

3 Sometimes


1 I have been able to fit most of the things I need to do

in spite of the time taken by caring for my ill

relative.

2 I have been certain about what to do about my ill

relative.

11 I have found that helping my ill relative has made I

feel closer to him / her.

12 It has made I happy to know that my ill relative is

being cared for by his / her family.

74


19 I have become aware of my inner strengths.

20 I have come closer to God.

29 I have learned to do new things.

30 I have made new friends.

43 I have thought of the help I give my ill relative as an

opportunity to repay him / her.

44 Caring for my ill relative has made me appreciate life

more.

75

Personal Resource Questionnaire (PRQ2000)

Below are some statements with which some people agree and others

disagree. Please read each statement and circle the response most appropriate for you.

1 I Strongly Disagree 5 I Somewhat Agree

2 I Disagree 6 I Agree

3 I Somewhat Disagree 7 I Strongly Agree

4 Neutral

No Statements 1 2 3 4 5 6 7

1 There is someone I feel close to who

makes me feel secure

2 I belong to a group in which I feel

important

8 Among my group of friends we do favors

for each other

9 I have the opportunity to encourage others

to develop their interests and skills

14 I have people to share social events and

fun activities with

15 I have a sense of being needed by another

person

76

Burden Assessment Schedule (BAS)

Below are some questions about your experiences in caring for patients with

schizophrenia. Please choose and circle the answer that best describes your feeling.

Try to answer as honestly as possible and remember that the information is strictly

confidential.

No Questions

Not

at

all

To s

om

e

exte

nt

Ver

y m

uch

1 Do you think that your family appreciates the way you

care for the patient?

2 Does the patient’s illness prevent you from having a

satisfying relationship with the rest of your family?

3 Does your spouse help with family responsibilities? *

9 Do you sometimes feel depressed and anxious

because of the patient?

10 Do you sometimes feel that there is no solution to

your problems?

11 Has your family stability been disrupted by the

patient’s illness (frequent quarrels, break-up)

77

No Questions

Not

at

all

To s

om

e

exte

nt

Ver

y m

uch

19 Do you have the feeling that the patient understand

and appreciates your effort to help him/her?

20 Is the patient’s illness preventing you from looking

for a job?

* These questions only for the caregiver who is spouse of patient

78

APPENDIX C

Instruments (Indonesian version)

79

Kuesioner Data Demografi

Data Pasien

1. Umur: . . . . . . . . . . . tahun

2. Jenis kelamin:

Pria Wanita

3. Status:

Belum menikah

Menikah

Cerai

4. Pendidikan:

Tidak tamat SD

SD

SMP

SMA/SMK

Perguruan tinggi

5. Pekerjaan:

Tidak bekerja Karyawan swasta

Ibu rumah tangga Petani

Pensiunan Pengusaha

Karyawan negeri Lain-lain (spesifik) . . . . . . . . . . .

6. Lama menderita skizofrenia (dari medical records): . . . . . . . . . . . . tahun

7. Berapa kali opname di RSJ Menur (dari medical records): . . . . . . . . . . . .

80

Data keluarga caregiver pasien dengan skizofrenia

1. Umur: . . . . . . . . . . . tahun

2. Jenis kelamin:

Pria Wanita

3. Status:

Belum menikah

Menikah

Cerai

4. Pendidikan:

Tidak tamat SD

SD

SMP

SMA/ SMK

Perguruan tinggi

5. Pekerjaan:

Tidak bekerja Karyawan swasta

Ibu rumah tangga Petani

Pensiunan Pengusaha

Karyawan negeri Lain-lain (specifik) . . . . . . . . . . .

6. Hubungan dengan pasien:

Pasangan Sepupu

Ayah / Ibu * Paman / Tante *

Anak Lain-lain (spesifik) . . . . . . . . . .

Saudara

7. Pendapatan serumah: . . . . . . . . . . . . . . IDR/ bulan

8. Jumlah anggota keluarga: . . . . . . . . . . . . . . orang

9. Lama dalam merawat pasien: . . . . . . . . . . . . tahun

10. Rerata waktu yang diperlukan dalam merawat pasien (tidak termasuk

saat pasien sedang tidur): . . . . . . . . . . . . . . . jam/ hari

81

Skala Penilaian Gejala dan Perilaku Gangguan Jiwa

Dibawah ini adalah daftar gejala dan perilaku gangguan jiwa. Silahkan pilih

dan lingkari angka yang menurut Anda itu menunjukkan frekuensi anggota keluarga

Anda yang menderita skizofrenia berprilaku tersebut selama beberapa minggu ini.

0 Tidak Pernah 1 Jarang 2 Sering 3 Selalu

No Gejala dan Perilaku 0 1 2 3

1 Kurang mampu mengurus diri sendiri

2 Makan terlalu banyak atau terlalu sedikit

3 Tidur terlalu banyak atau terlalu sedikit

13 Merasa tidak mampu atau tidak berguna

14 Punya keyakinan yang sulit diterima akal sehat

15 Punya halusinasi

82

No Gejala dan Perilaku 0 1 2 3

26

27 Minum minuman beralkohol atau minuman

penambah energi

28 Menjadi kecanduan akan obat-obatan ilegal

29 Menjadi kecanduan akan obat-obatan dari

dokter

83

Skala Pengetahuan Tentang Skizofrenia

Dibawah ini adalah beberapa pertanyaan tentang skizofrenia. Silahkan pilih

dan lingkari jawaban yang menurut Anda paling tepat.

1. Skizofrenia adalah:

a.

b. Sebuah penyakit medis serius yang mengganggu kemampuan seseorang

untuk menafsirkan realitas

c.

2. Penyebab dari skizofrenia adalah:

a. Sebuah peristiwa masa kecil yang traumatis

b.

c.

d. Tidak ada satu penyebab tertentu untuk skizofrenia, tapi penyakit ini

diyakini disebabkan oleh kombinasi genetik kerentanan dan faktor

lingkungan eksternal

3. Untuk dapat didiagnosis dengan skizofrenia:

a. Seseorang harus mengaku mendengar suara-suara di kepala mereka

b.

c.

d. Psikotik atau adanya gejala gangguan realitas yang diamati setidaknya

selama enam bulan

4. Skizofrenia ditandai dengan:

a. Halusinasi

b.

c.

d. Semua di atas

84

5. Orang dengan skizofrenia:

a. Mereka hidup lebih lama dan sehat fisik

b.

c. Hidup dengan rentang waktu yang sama seperti orang tanpa

skizofrenia

6. Orang dengan skizofrenia tidak sekeras orang biasa.

a. Benar

b. Salah

7. Skizofrenia adalah penyakit otak yang dapat dengan mudah disembuhkan

dengan rencana pengobatan yang mencakup kombinasi obat-obatan dan

psikotherapi.

a. Benar

b. Salah

85

Kuesioner Tentang Sikap Terhadap Skizofrenia

Dibawah ini terdapat beberapa pernyataan. Silahkan pilih dan lingkari angka

yang menunjukkan pendapat Anda. Jawablah dengan jujur karena semua informasi

yang diberikan sangat dijaga kerahasiaannya.

Contoh:

Semua pekerjaan harus dibayar dengan gaji 1 2 3 4 5

Acara televisi sekarang ini sangat bagus 1 2 3 4 5

1 Sangat tidak setuju 3 Tidak tahu 5 Sangat setuju

2 Tidak setuju 4 Setuju

No Pernyataan 1 2 3 4 5

1 Saya menghindari bercakap-cakap dengan

anggota keluarga yang menderita skizofrenia

2 Saat dia dalam keadaan tidak terkontrol, saya

menjadi agresif kepadanya

5 Saya memilih untuk menyembunyikan

penyakitnya dari anggota keluarga yang lain dan

teman-teman

8 Saya tidak suka membicarakan apa yang terjadi

dengan dia kepada orang lain

9 Perilakunya semakin memburuk dari waktu ke

waktu

86

Skala Pengalaman Positif Dalam Memberikan Perawatan

Dibawah ini terdapat beberapa pernyataan mengenai pengalaman positif

dalam merawat anggota keluarga yang menderita skizofrenia. Silahkan pilih dan

lingkari angka yang menunjukkan pengalaman Anda.

1 Tidak pernah 3 Kadang-kadang 5 Selalu

2 Jarang 4 Sering


1 Saya merasa mampu menyesuaikan waktu yang

saya butuhkan dengan waktu yang diperlukan

dalam merawat anggota keluarga yang

menderita skizofrenia

2 Saya yakin akan apa yang saya lakukan ke dia

11 Membantu dia telah membuat saya merasa

lebih dekat dengannya

12 Saya merasa senang jika dia dirawat oleh

anggota keluarganya sendiri

87


19 Saya menjadi lebih peduli dengan kelebihan

yang ada dalam diri saya

20 Saya menjadi lebih dekat dengan Tuhan

29 Saya belajar untuk melakukan hal yang baru

30 Saya mempunyai banyak teman baru

43 Saya berpendapat menolong dia adalah sebagai

kesempatan dalam membalas kebaikannya

44 Merawat dia membuat saya lebih menghargai

hidup

88

Kuesioner Sumber Dukungan Pribadi

Dibawah ini terdapat beberapa pernyataan yang sebagian orang mungkin

setuju atau tidak setuju. Silahkan pilih dan lingkari angka yang menunjukkan dengan

tepat pendapat Anda.

1 Sangat tidak setuju 4 Netral 7 Sangat setuju

2 Tidak setuju 5 Kadang setuju

3 Kadang tidak setuju 6 Setuju

No Pernyataan 1 2 3 4 5 6 7

1 Saya mempunyai seseorang yang dekat

dan membuat rasa aman

2 Saya bergabung dalam kelompok

dimana saya dapat merasa berarti

8 Bersama dengan teman-teman saya,

kami saling tolong-menolong

9 Saya berkesempatan untuk mendukung

orang lain dalam membangun minat dan

kemampuannya

14 Saya mempunyai keluarga/teman yang

saling berbagi dan bersenang bersama

15 Saya merasa dibutuhkan oleh seseorang

89

Instrument Penilaian Beban Perawatan

Pertanyaan berikut ini mengenai pengalaman Anda selama merawat anggota

keluarga yang menderita skizofrenia di rumah. Untuk setiap pertanyaan, jawablah

yang paling menggambarkan perasaan Anda. Meskipun beberapa pertanyaan ini

bersifat pribadi, cobalah untuk menjawab sejujur mungkin. Berilah tanda pada

kolom jawaban yang tersedia.

No Pertanyaan

Tid

ak

sam

a

sek

ali

Ya, sa

mp

ai

tara

f te

rten

tu

San

gat

1 Apakah keluarga Anda menghargai cara merawat

pasien?

2 Apakah penyakit pasien menghambat Anda dalam

menjalin hubungan yang baik dengan anggota

keluarga lainnya?

3 Apakah pasangan Anda ikut membantu dalam

kegiatan rumah tangga?*

9 Apakah Anda kadang-kadang merasa tertekan dan

cemas karena pasien?

10 Apakah Anda kadang-kadang merasa bahwa persoalan

yang Anda hadapi tidak ada jalan keluarnya?

11 Apakah keharmonisan keluarga Anda terganggu oleh

penyakit pasien (sering bertengkar, terancam pisah)?

90

No Pertanyaan

Tid

ak

sam

a

sek

ali

Ya, sa

mp

ai

tara

f te

rten

tu

San

gat

18 Apakah Anda sering merasa frustrasi karena

lambatnya/tidak adanya perbaikan pada pasien sama

sekali?

19 Apakah Anda merasa bahwa pasien dapat mengerti

dan menghargai usaha Anda dalam menolongnya?

20 Apakah penyakit pasien menghambat Anda dalam

mencari pekerjaan?

* Butir ini hanya ditanyakan bila caregiver adalah pasangan hidup pasien

91

APPENDIX D

The Institutional Review Board (IRB)

Approval

92

APPENDIX E

Letter of asking permission for data collection

93

APPENDIX F

Letter from Menur Mental Hospital, Surabaya, Indonesia

94

APPENDIX G

The acceptance permission for using the instruments

The Acceptance Permissions of Using Instruments

1. Burden Assessment Schedule Indonesian version

Subject: Re: Ask permission to using the instrument

From: Prianto Djatmiko ([email protected])

To: [email protected];

Date: Monday, 8th December 2014 8:58

Dear Faida Annisa

Thank you for your e-mail and I Hope you in a good condition today.

I really appreciated for your permission to using the Burden Assessment

Schedule in Bahasa Indonesia version since that instrument has published for

research purposed.

Kind Regards

Prianto Djatmiko

Psychiatrist

Mental Health Check-Up Unit

Dr. Soeharto Heerdjan Psychiatric Hospital

Jl. Prof. DR. Latumeten No. 1

Grogol Petamburan, Jakarta Barat 11460

INDONESIA

Phone : +62215682841

Facsimile : +62215682842

Mobile Phone: +6281218808806

2014-12-07 10:34 GMT+07:00 faida annisa <[email protected]>:

Dear Dr. Prianto Djatmiko,

I would like to introduce myself first. I am Faida Annisa, come from Indonesia. I

have been studying at Faculty of Nursing, Burapha University, Thailand.

I am interested with your study entitled "Penentuan validitas dan reliabilitas the

burden assessment schedule versi bahasa Indonesia dalam menilai beban


99

perawatan pada seorang yang merawat anggota keluarganya yang menderita

skizofrenia" and would like to ask your permission to using that instrument in my

study with title "Predicting factors of burden among family caregivers of patients

with schizophrenia in Surabaya, Indonesia".

I look forward to hearing from you in the near future.

Thank you very much in advanced for your cooperation.

Sincerely,

Faida Annisa

Student of Master Nursing Science

Burapha University

Thailand

2. Knowledge Scale Indonesian version

Subject: Re: Ask permission to use the instrument

From: tut alit ([email protected])


Date: Monday, 8th

December 2014 8:29

Dear Faida Annisa,

Ok, i give you permission to use the instrument knowledge scale indonesia

version.

regards

I Ketut Alit Adianta

Sent via Xiaomi

faida annisa <[email protected]> wrote:

Dear Mr. I Ketut Alit Adianta,



I read your study entitled "Penentuan validitas dan reliabilitas the burden

assessment schedule versi bahasa Indonesia dalam menilai beban perawatan pada

seorang yang merawat anggota keluarganya yang menderita skizofrenia" and


100

would like to ask your permission to using the Knowledge Scale Indonesian

version instrument for my study with title "Predicting factors of burden among

family caregivers of patients with schizophrenia in Surabaya, Indonesia" since one

of my independent variables is knowledge about schizophrenia.

Would you like to send the instrument for me?



Sincerely,

Faida Annisa


Burapha University

Thailand

3. Scale for Positive Aspects of Caregiving Experience


From: sandeep grover ([email protected])


Date: Sunday, 7th December 2014 11:27

Dear Faida,

You can use the instrument for your research.

Best wishes,

Dr Sandeep Grover

Associate Professor

Department of Psychiatry

PGIMER, Chandigarh -160012, INDIA

Phone - 0091- 9316138997, 7087009807 (mobile)

0091- 1722756807 (office)

From: faida annisa <[email protected]>

To: "[email protected]" <[email protected]>

101

Sent: Sunday, December 7, 2014 9:45 AM

Subject: Ask permission to use the instrument

Dear Sandeep Grover,



I got your email address from you article with title "Caregiving appraisal in

schizophrenia: A study from India" which published by Social Science &

Medicine 98, 135-140.

I am interested with your study, particularly the caregiving appraisal variable in

which you as developer of that instrument, Scale for Positive Aspects of

Caregiving Experience (SPACE).

I would like to ask your permission to using that instrument in my study with title

"Predicting factors of burden among family caregivers of patients with

schizophrenia in Surabaya, Indonesia".

One of my independent variables is caregiving appraisal, therefore I would like

to use your instrument to assess this variable.



Sincerely,

Faida Annisa


Burapha University

Thailand

102

4. Attitudes Towards Schizophrenia Questionnaire


From: [email protected] ([email protected])


Date: Monday, 8th December 2014 11:40

Dear Faida,

Yes sure, you have my permission.

Regards,

Alejandra.

Dear Alejandra Caqueo-Urizar,

I would like to introduce myself first. I am Faida Annisa, come from

Indonesia. I have been studying at Faculty of Nursing, Burapha University,

Thailand.

I got your email address from you article with title "Attitudes and burden

in relatives of patients with schizophrenia in a middle income country"

which published by BMC Family Practice 12(101).

I am interested with your study, particularly the instrument to assess

caregivers attitude toward schizophrenia.

I would like to ask your permission to using that instrument in my study

with title "Predicting factors of burden among family caregivers of

patients with schizophrenia in Surabaya, Indonesia".

One of my independent variables is attitude toward schizophrenia,

therefore I would like to use your instrument to assess this variable.



Sincerely,

Faida Annisa


Burapha University

Thailand

103

5. Personal Resource Questionnaire (PRQ2000)


From: [email protected]


Date: Tuesday, 7th

April 2015

Dear Faida Annisa,

Bangsaen, Thailand

Please let this letter serve as your permission to use the PRQ85 or PRQ2000.

Any changes to question stems or answer sets must be approved in advance.

Translation of the PRQ into other languages is acceptable and encouraged. A copy

of the translated version of the PRQ should be sent to me. If you do, in fact, use

the PRQ for data collection in your study, I ask that you send me an abstract of

your findings. Should you have any questions or need clarification, kindly write or

e-mail [email protected]. I will try to respond in a timely manner.

Thank you for your interest in the PRQ. I hope that this social support measure

will be helpful in your research.

Sincerely,

Clarann Weinert, SC,PhD,RN,FAAN

Professor Emerita

www.montana.edu/cweinert


104

BIOGRAPHY

Name Faida Annisa

Date of Birth July, 8th

, 1986

Place of Birth Jakarta, Indonesia

Present address Puri Taman Asri AA-10 Pagesangan Surabaya,

Indonesia

Position held

2011 – current Lecturer

KertaCendekia Nursing Academy, Sidoarjo,

Indonesia

Education

2004 – 2007 Diploma Degree of Nursing

Polytechnic of Health Surabaya, Indonesia

2007 – 2010 Bachelor of Nursing

Faculty of Nursing, Airlangga University,

Surabaya, Indonesia

2013 – 2015 Master of Nursing Science

(International Program)

Faculty of Nursing, Burapha University,

Chonburi, Thailand

Awards or Grants

2015 The master and doctoral thesis support grant,

fiscal year 2015, Burapha University,

Chonburi, Thailand

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