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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
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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.
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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
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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
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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
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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
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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
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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
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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
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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
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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).