CHAPTER I

INTRODUCTION

Background and significance Schizophrenia is a devastating psychiatric disorder which can progressively

result in long-term disability in patients (Yusuf, Nuhu, & Akinbiyi, 2009). It poses the

numerous burden for patients and their caregivers as well as the societies in which

they live (Hsiao, Klimidis, Minas, & Tan, 2006; Kung, 2003; Saunders, 2003; Yip,

2004). It also poses the challenges in its management and consequences (Awad &

Voruganti, 2008). The psychiatric disorder of schizophrenia refers to “delusions, any

prominent hallucinations, disorganized speech, or disorganized catatonic behavior”

(American Psychiatric Association, 2000). According to World Health Organization

(2005), approximately 24 million people suffer from this disease worldwide with

average lifetime prevalence rate between 0.5-1%. The peak incidence of its onset is

15 to 25 years of age for men and 25 to 35 years of age for women. In Vietnam,

Nguyen (2010) found the prevalence of schizophrenia ranged from 0.52-0.61%.

The median age at onset for men is between 18 and 25 years and for women is between

25 and 30 years. Approximately, the recurrence rate among chronic schizophrenic

patients was about from 88-94%.

According to the literature review, the trend in psychiatric care focuses on

deinstitutionalization and community based psychiatric care services have almost

formalized the role of the caregivers (Honkonen, Saarinen, & Salokangas, 1999;

Kohn-Wood & Wilson, 2005; Song, Chang, Shih, Lin, & Yang, 2005). The family

and caregiver's role have been integrated in the treatment plans and in policy making.

In addition, the more effectiveness of newer atypical antipsychotic drugs as well as

advances in community based treatment lead to the reduction of time for patients

staying in the hospitals (Videbeck, 2008). Many patients with schizophrenia live

successfully in the community, but some do not. These patients developed more

bizarre ideas, social withdrawal, violent behavior, substance abuse, and suicide

attempts (Björkman & Hansson, 2002; Glynn, Cohen, Dixon, & Niv, 2006;

Middelboe et al., 2001; Provencher & Mueser, 1997). In Vietnam, the general trend of

2

the mental health system has promoted more family involvement in the care of

psychiatric patients, particularly schizophrenia (Dien & Dong, 2004). Furthermore, in

Vietnamese or other Asian cultures, mental illness is often considered as a punishment

or the haunt of devils for misdeeds done by the patients or their family members.

Therefore, mental illness is generally viewed as a family problem rather than a societal

problem (Nguyen, 2010; Wynade et al., 2005; Yang, 2007; Yip, 2003).

Worldwide, numerous studies have estimated that 40-90% of patients with

schizophrenia and other psychiatric disorders live with their families. These patients

keep close contact with their friends or families. Moreover, they rely on their families

for ongoing care as well as physical and emotional support throughout their lives

(Björkman & Hansson, 2002; Fujino & Okamura, 2009; Jungbauer, Stelling, Dietrich,

& Angermeyer, 2003; Lauber, Eichenberger, Luginbuhl, Keller, & Rossler, 2003;

McDonell, Short, Berry, & Dyck, 2003; Møller, Gudde, Folden, & Linaker, 2009;

Schwartz & Gidron, 2002; Sun & Cheung, 1997; WHO, 2005; Yip, 2004;

Zauszniewski, Bekhet, & Suresky, 2009). Researchers have asserted that the families

not only provide the core, long-term assistance of housing and financial aid, but many

of them also serve as “invisible” rehabilitation agencies (Jungbauer et al., 2003).

The shift towards community care for psychiatric patients has also led to

burdensome to their families. Recently, studies conducted with family member of

persons with mental illnesses have been focusing more on the negative consequences

of caregiving, which are called “caregiver burden” (Awad & Voruganti, 2008; Van

Der Voort, Goossens, & Van Der Bijl, 2007). Caregiver burden can be defined as the

consequences of the activities involved with providing necessary direct care to a

relative or friend, including observable and perceived costs to the caregiver (Jones,

1996; Maurin & Boyd, 1990; Nijober, Triemstra, Tempelaar, Sanderman, & Van den

Bos, 1999a). Burdens among these caregivers have been identified such as physical

problems, restrictions in social life, tense relationships in the family, changes in

household routines, diminished opportunities for leisure, deteriorating finances, emotion

problems, and disturbance in their work performance (Dyck, Short, & Vitaliano, 1999;

Lowyck et al., 2004; Martens & Addington, 2001; Möller-Leimkühler, 2005; Ohaeri,

2001; Samele & Manning, 2000). The close connectednesses between the people in the

family make them feel guilty if they cannot participate in taking care for the ill relatives.

3

In other words, the responsibility of taking care for patients with mental illness is on

family, because of all health care policy, culture, and the family perception.

Caregiver burdens can be classified as objective burdens, which are

observable, concrete, tangible costs or as subjective burdens, which are negative or

positive feeling experienced by the caregivers (Jones, 1996; Maurin & Boyd, 1990;

Nijboer, Triemstra, Tempelaar, Sanderman, & Van den Bos, 1999b). According to

Ivarsson, Sidenvall, and Carlsson (2004), objective burden is the existence of problems

and changes in family life (household routine, relationships, and leisure time) that

occur because a family member requires care due to an illness, while subjective

burden is the emotional feelings and mental health status (guilt, feelings of loss, and

anxiety) of caregivers. Furthermore, while the objective burden is predominantly

related to the close contact between families and people with mental health problems,

the subjective burden is determined by many factors, including the resilience and

different coping mechanisms used by careers, the strength of relationships prior to the

onset of illness, the level of support from social networks and the availability of, and

access to, formal services. More recently, researchers have broadened their view of

burden and see it as a multidimensional construct: physical, emotional (psychological),

social and financial problems associated with the caregiving experience (Chou, 2000;

Rungreangkilkij & Gilliss, 2000; Samele & Manning, 2000).

Notably, research studies over the past several decades have provided

consistent evidence that caregivers of patients with schizophrenia and other psychotic

disorder experience high levels of burden (Baronet, 1999; Gutiérrez-Maldonado,

Caqueo-Urízar, & Kavanagh, 2005; Hou, Ke, Su, Lung, & Huang, 2008; Kung, 2003;

Lim & Ahn, 2003; Liu, Lambert, & Lambert, 2007; Loukissa, 1995; Saunders, 2003;

Stengard, 2002; Van Wijngaarden et al., 2003; Yang, Hsieh, Wu, Yeh, & Chen,

1999). Studies from many parts of the world conducted with caregivers of patients

with schizophrenia showed evidence that these caregivers reported significant

psychological distress such as stresses, restlessness, frustration, emotional distress,

anxiety, depression, grief, stigma, and somatic complaints (Hou et al., 2008;

Jungbauer, Wittmun, Dietrich, & Angermeyer, 2004; Lu & Wykle, 2007; Martens &

Addington, 2001; Östman & Hansson, 2001; Perlick et al., 2006; Samele & Manning,

2000; Saunders, 2003). According to Magliano and colleagues (2002), there is 97

4

percent of relatives reported feelings of loss, and 83 percent of participants stated that

they were cried or felt depressed. In addition, 73 percent of relatives had neglected

their hobbies and 68 percent of them were unable to take their holiday time because of

the patient’s situation. Moreover, Wittmund, Wilms, Mory, and Angermeyer (2002)

revealed that the prevalence of depressive disorders among caregivers of people with

mental health problems is higher than in the general population.

Some studies have investigated physical problems of caregivers. These

physical problems found to be increased among those who provided highest levels of

care for the patients (Chang, Chiou, & Chen, 2010; Happe & Berger, 2002; Sawatzky

& Fowler-Kerry, 2003). There are various kinds of indicators of negative impacts

related to physical problems which can define in many terms. Examples of negative

impact results from physical problems are the increase of doctors and emergency visit

and hospitalizations (Schene, Van Wijngaarden, & Koeter, 1998). The caregivers also

have impairments in their personal, social, and vacational role performance as well as

their leisure times (Jungbauer et al., 2004; Magana, Ramirez-Garcia, Hernandez, &

Cortez, 2007). Other studies have reported that among the negative consequences of

giving care cited by parents, the impact on their health was at greatest (Happe &

Berger, 2002; Schene et al., 1998). Among the symptoms cited, insomnia, fatigue,

headache, neck and shoulder pains were most frequently reported. Moreover,

Thornicroft et al. (2004) found that the most common consequences for families were

worries about their health and future.

Previous studies also have shown that economic constraints and financial

demands, including loss of times and potential for earning incomes have also reported

(Andrews, Sanderson, Corry, Issakidis, & Lapsley, 2003; Chang et al., 2008;

Mangalore & Knapp, 2007; Perkins, 2005). Schizophrenia can entail significant

economic costs for individuals, families, and society. While, the availability of care

given by family members help reduces the need for professional support, it can also

give troubles to the family members. Spending time to take care of patients lead to the

reduction of their working times as well as their leisure activities and disturbances in

their daily routine (Goeree et al., 2006; Gutiérrez-Maldonado et al., 2005; Möller-

Leimkühler, 2005; Östman & Hansson, 2001; Wu et al., 2005). The result from a study

of Goeree and colleagues (2006) revealed that the costs of schizophrenia in Canada

5

in 2004 were estimated to be CAN$6.85 billion with CAN$2.02 billion accounted for

healthcare and non-healthcare costs and CAN$4.83 billion accounted for productivity

losses associated with premature mortality and morbidity. In the US, the overall costs

of schizophrenia in the year 2002 were estimated to be $62.7 billion (Wu et al., 2005).

Evidence suggests that physical, emotional and economic distress negatively affect

caregiver's quality of life. A result of a number of unfulfilled needs such as, restoration

of patient functioning in family and social roles, economic burden, lack of spare time

were reported among these caregivers (Caqueo-Urı´zar, Gutie´rrez-Maldonado, &

Miranda-Castillo, 2009; Foldemo, Gullberg, Ek, & Bogren, 2005).

According to the literature review, many factors associated with burden as

perceived by caregivers have been identified. These include patient’s and caregiver’s

characteristics. The patient’s characteristics are age, gender, duration of illness,

functional status, and symptoms severity (Creado, Parkar, & Kamath, 2006;

Gutie´rrez-Maldonado et al., 2005; McDonell et al., 2003; Valiakalayil, Paulsen, &

Tibbo, 2004). These are also the characteristics of caregivers found to be related with

burden. These include age, gender, socioeconomic status, health status, income, and

education level (Caqueo-Urı´zar & Gutie´rrez-Maldonado, 2006; Chien, Chan, &

Morrissey, 2007). In this study, the researcher will focus on factors including

caregiver’s age, education level, health status, average time per day for taking care

patients, and perceived severity of patient’s illness.

Age of caregivers was found to be related to caregiver’s burden. Chien et al.

(2007) studied 203 caregivers recruited from three regional psychiatric outpatient

clinics in Hong Kong and found that the caregiver’s burden score was positively

correlated with caregiver’s age. This is in consistent with the findings from the study

conducted by Budd and Hughes (1997) and Cook et al. (1994). In addition,

Pipatananond and colleagues (2002) found that age of caregiver was significantly and

positively correlated with their perceived burden. According to Huang (2004), the

caregivers who were older were at greatest risk for experiencing negative caregiving

outcomes (e.g., caregiver burden and poor mental health). In contrast, other studies

found that caregiver’s age was negatively related to burden (Chang et al., 2010;

Reinhard & Horwitz, 1995). However, Ukpong (2006) found that there was no

6

relationship between age and caregiver burden. Due to its inconsistent findings, more

research is needed to be conducted.

Apart from age, caregiver’s education level is also related with the burden of

caregiver. It is evidenced that caregivers with more years of education had higher

distress (burden) levels than those with less education (Greenberg et al., 1993;

Tennakoon et al., 2000). In contrast, other studies asserted that caregivers with higher

education levels reported their needs for more knowledge about mental illness and

management of patient’s behaviors. They have more positive coping patterns, higher

quality of life, and less caregiver burden (Chen et al., 2004; Chien & Norman, 2003;

Cook et al., 1994; Czuchta & McCay, 2001; Li, Lambert, & Lambert, 2007).

Surprisingly, many other researcher report a non-significant relationship between

education level and caregiver burden (Chien et al., 2007; Koukia & Madianos, 2005;

Ukpong, 2006). Based on literature review, it showed inconsistent finding regarding

the association of education level and burden. Therefore, this variable should be

continuously investigated.

Caregiver’s health status in this study refers to the physical and mental

health. It also related with caregiver burden. Hou et al. (2008) found that the physical

health and mental health condition of the primary caregiver of schizophrenia patients

was the most important factor determining the caregiver burden. According to

Gutiérrez-Maldonado et al. (2005), burden was closely associated with poorer

functional state (physical function, social function, physical problems, and emotional

problems), well-being (mental health, vitality, and pain) of caregivers. Li et al. (2007)

found that the significant negative correlation between caregiver’s physical health and

their subjective burden suggests that those with bad health status not only might have

had anxiety about the health of their ill family member, but also about their own

health. In addition, caregivers in poor health have significantly higher burden levels

than those in good health (Sisk, 2000).

Burden also associated with the amount of times the caregivers spending

with the patients. Magliano et al. (1998) reported that among 236 relatives of patients

with schizophrenia residing in five European countries, they spent an average of 6-9

hours per day for taking care patients. Martens and Addington (2001) also found some

evidence in relationships between caregiver burden and number of hours contacting

7

with patient, mental condition, and patient’s symptoms and behaviors. Similarly, the

degree of daily contact with the patient was also found to be the predictor of

perceived objective and subjective burden. The higher the number of hours spent with

the patient, the greater degree of perceived burden by the caregiver (Chang et al.,

2010; Koukia & Madianos, 2005; Li et al., 2007).

Perceived severity of illness among caregiver is another factor related with

caregiver’s burden. It refers to caregiver’s perception of the severity about behavior

and symptom of the patients. Findings from various studies demonstrated that the

severity and frequency of psychotic symptoms and behavioral disturbances of patients

are one of the most important factors influencing caregiver burden (Grandón, Jenaro,

& Lemos, 2008; Hou et al., 2008; Lauber et al., 2003; Miyamoto, Tachimori, & Ito,

2010; Provencher & Mueser, 1997; Ricard, Bonin, & Ezer, 1999). According to Hou

et al. (2008), both positive and negative symptoms presented among patients with

mental illnesses resulted in significantly greater degrees of caregiver burden. This

result is consistent with the findings from study conducted by Roick et al. (2007). In

addition, Grandón et al. (2008) and Dyck, Short, and Vitaliano (1999) found that

these patients with more serious symptoms reported higher burden. Moreover,

responsibility attribution for behavioral disorders is one of the variables that most

helps explain burden. Those caregivers who have lower levels of self-control during

giving care to patients reported higher levels of burden. This finding is consistent with

the studies of Webb et al. (1998) and Ricard et al. (1999).

In conclusion, there are many studies conducted in the West and in some

Asian countries, affirming the existence of burden among caregivers of patients with

schizophrenia. However, most of these investigations have been conducted outside

Vietnam. It still remains a big gap of understanding regarding burden and its associated

factors among Vietnamese caregiver with schizophrenia. Lack of knowledge and

better understanding regarding these issues is one of the barriers impeding health care

providers, nurses in particular, from providing effective care to both caregivers and

their care recipients. Therefore, the study focusing on exploring burden and its

associated factors among Vietnamese caregivers should be a priority. This study

brought about baseline data and enable nurses to better address the needs, reduce the

8

distress or negative consequence of caring for persons with schizophrenia. These

would in-turn help promote quality of life for both the caregivers and the patients.

Research questions The research questions guiding this study are as follows:

1. What are the levels of burden among caregivers of patients with

schizophrenia in Thai Nguyen, Vietnam?

2. Are there any relationships between: Caregiver’s age, education level,

average time per day for taking care patients, health status, and perceived severity of

illness and burden?

Research objectives

The purposes of this study are to describe caregiver burden and test its

relationships with caregiver’s age, education level, health status, average time per day

for taking care patients, and perceived severity of illness among caregivers of patients

with schizophrenia in Thai Nguyen, Vietnam.

Research hypotheses The hypotheses for this study are as follows: 1. Caregiver’s age is associated with burden

2. Caregiver’s education level correlates with burden

3. Caregiver’s health status is associated with burden

4. Average time per day for taking care patients correlates with burden

5. Caregiver’s perceived severity of patient’s illness is associated with burden

Scope of the study This study examined burden among caregivers of patients with

schizophrenia. Data were conducted at Psychiatric Hospital in Thai Nguyen province,

Vietnam. The duration for data collection was two months period from December,

2010 to February, 2011. Subjects in this study are caregivers who are the primary

9

caregivers for the patients. They usually accompany with patients to receive service at

Outpatient Department unit at Psychiatric Hospital.

Theoretical framework Roy’s Adaptation model is employed to guide this study. According to Roy

(1984), the person is regarded as an adaptive system in constant interaction with an

internal and external environment. Environment encompasses variety sources of

internal and external stimuli. This changing environment is identified as focal,

contextual, and residual stimuli. A person responds to these stimuli by regulator and

cognator functioning in physiological, self-concept, and role function and

interdependence modes. The behavior related to these four modes becomes the

feedback to the system. When human beings confront stressors, they will try to adapt

themselves and find ways to cope with the stressors (i.e. stimuli) in order to remain

healthy or maintain their equilibriums. When each individual is unable to cope

effectively with the stressful situation, negative consequences or inability to maintain

equilibrium may occur to that particular person. These can be implied to the context

of burden among caregivers of patients with schizophrenia. The caregivers have been

the primary source of protection, aid, and support for their family members diagnosed

with schizophrenia. However, providing care for these patients are progressively

overwhelming experiences for some caregivers. The constellation of negative effects

arising from the care of these patients can be referred to as caregiver burden.

The burden perceived by the caregivers reflects the alteration of existent

equilibrium. Based on Roy’s Adaptation Model, burden can be implied as an indicator

of health deviation reflecting the incongruence between stimuli and adaptation.

A substantial body of research has documented that caregivers of patients with

schizophrenia experience considerable physical, psychological and financial problems

as a results of giving care to the patients. Evidences also suggested that there are

multiple factors found to be correlated with burden. However, this study focused on

some selected factors including caregiver’s age, education, health status, average time

spent for taking care patients and perceives severity of patient’s illness. Previous

research showed that caregivers who are more likely to report higher degree of

10

burdensome are older, low education, reported poorer health status and spending more

times in taking care of the patients as well as perceived more severity of patient’s

illnesses. Burden in this study is the perception of caregivers about negative

consequences of the activities in taking care for patients with schizophrenia. The

research conceptual framework of this study can be summarized in the Figure 1.

Figure 1. Research framework

Figure 1 Conceptual framework

Definition of terms The definitions of variables examined in this study can be summarized

as follows:

Caregivers refers to the persons who provide primary care for the patients

with schizophrenia without payment, live in the same household, and feel most

responsible for patients, regularly face-to-face contact with patients.

Burden refers to the perception of caregivers about negative consequences

of the activities in taking care for patients with schizophrenia. The Family Burden

Interview Schedule Scale was used to measure burden. The original version was

developed by Pai and Kapur’s (1981). In this study, its modified version by

Poonnotok (2007) was used.

Burden

- Caregiver’s age

- Caregiver’s education level

- Caregiver’s health status

- Average time per day for

taking care patients

- Caregiver’s perceived severity

of patient’s illness

11

Caregiver’s age is the length of stage of life which measured in years. In

this study, six months or above is rounded up to be one year.

Caregiver’s education refers to the highest level of education that the

caregivers had accomplished.

Caregiver’s health status refers to caregiver’s perception toward their

physical and mental health condition. It was assessed by the General Health

Questionnaire “GHQ” developed by Goldberg and Hillier (1979) and 2 single item

questionnaires “Presently, how would you rate your health?” and “Before being a

caregiver, how would you rate your health?”.

Average time per day for taking care patients refers to the average hours

per day that caregivers spent for providing direct care to their patients.

Caregiver’s perceived severity of patient’s illness refers to caregiver’s

perception regarding the severity of symptom that the patients have or present. In this

study, it is assessed by the psychiatric Behavior and Symptom Perception Scale which

was modified by Poonnotok (2007). This scale was originally developed by

Pipatananond (2001).