Table of Contents
Table of contents
List of tables
List of figures
Chapter 1 : Introduction
1.2 Justification of the study
1.5 Operational definitions
Chapter 2: Literature Review
2. Literature Review
Chapter 3: Materials and Methods
3.1 Type of study
3.2 Place of study
3.3 Justification of place of study
3.4 Inclusion criteria
3.5 Exclusion criteria
3.6 Sample size
3.7 Sampling technique
3.8 Study period
3.9 Pre test
3.10 Research instruments
3.11 Ethical consideration
3.12 Procedure of data collection
3.13 Data processing and analysis
Chapter 4: Results
Chapter 5: Discussion
5.2 Limitations of the study
Chapter 6: Conclusions and Recommendations
6. Conclusions and Recommendations
Chapter 7: Bibliography
Appendices : IA – IV
List of Tables
Table 1.1: Socio-demographic characteristics of patients
Table 1.2: Socio-demographic characteristics of caregivers
Table 2: Univariate analysis of the association between the variables and burden in the caregiver
Table 3: Logistic regression analysis results of the variables associated with caregiver’s burden
Table 4: Level of burden and duration of illness of the patients
Table 5: Level of burden and duration of care giving 53
Table 6: Level of burden among caregivers according to the type of mood disorders of patients
Table 7: Relationship with the patients and the level of burden
Table 8: Family type of caregivers and level of burden
Table 9: History of suicidal attempts among the patients with different types of mood disorders
Table 10.1: Minimum, maximum and mean score of Zarit Burden interview
Table 10.2: Response of care givers to individual questions of Zarit Burden interview
List of Figures
Figure 1: Types of mood disorders diagnosed among the patients
Figure 2: Level of burden of caregivers
illustration not visible in this excerpt
Mood disorders are chronic illness with early adult onset. These impose a significant burden on a personal, medical and socioeconomic level of the caregivers. It is observed in Bangladesh that in almost all sort of patient with psychiatric illness including mood disorders depend on the care of their family members. It is a common practice and convention that every patient needs a compulsory whole time caregiver from their family during his or her hospital stay, especially in public hospitals. But, at present there is no reported research found on the caregiver burden of the patients with mood disorders in Bangladesh.
The objectives of this study are to determine the level of burden of caregivers of patients with mood disorders attended in a tertiary care hospital and to identify the possible association of duration, type of mood disorders, and the socio demographic variables on the burden of caregivers.
Materials and Methods
This was a cross sectional, analytical and descriptive study done in a tertiary care hospital located in Dhaka, city. Sample size was 95. The SCID-I applied on the subjects and they diagnosed mood disorders according the Axis I diagnosis of DSM IV. Then the pre designed socio demographic questionnaire applied to the patients and their selected caregivers. Caregiver’s burden was assessed by using the Zarit Burden Interview (ZBI). Statistical analysis done through SPSS version 17 and Pearson’s chi square test and general linear model analysis were used to estimate the level of significance.
It was found the positive relationship with the disease duration and caregiver burden level (p=0.000). The duration of providing care also significant (p=0.000) with the higher level of burden. Caregivers occupation influenced to the higher burden level p=0.047). Among the patients 44.2% diagnosed Major Depressive Disorder, 43.1% Bipolar Mood Disorder (Manic), 7.4% Bipolar Mood Disorder (Depressive) and 5.3% diagnosed Dysthymic Disorder. The caregiver from nuclear family (74.7%) felt higher degree burden than caregivers from joint family (24.3%). The family type and burden level bound significant relationship (p=0.013). Regarding the burden level 54.8% caregiver possessed severe burden, 24.2% moderate to severe burden, 18.9% mild to moderate burden and 2.1% possessed little or no burden.
Caregivers’ burden depends on the disease duration as well as some socio demographic factors. To provide a total care to the patients with mood disorders it is necessary to mitigate the caregiver’s burden. For this reason clinicians need to review periodically the status of caregiver’s burden. Further exploration is needed in future to assess the caregiver burden in community based, multi centered approach in long term follow up with a large sample size.
Most mentally ill persons reside with family members in Bangladesh with the primary caregiver having to cater for the patients’ needs. Caring for someone with psychiatric morbidity is associated with a high level of stress. The term caregiver burden refers to the emotional, social, and financial stresses that caring for a relative or friend with mental illness imposes on the caregiver (Hoenig et al., 1967).
Caregivers of people with bipolar disorder may experience a different quality of burden than is seen with other illnesses. A better understanding of their concerns is necessary to improve the training of professionals working with this population. Conceptualizing caregiver burden in a conventional medical framework may not focus enough on issues important to caregivers, or on cultural and social issues. Perceptions of caregivers about bipolar disorder have important effects on levels of burden experienced. It is important to distinguish between caregivers’ experience of this subjective burden and objective burden as externally appraised.
Subjective burden is defined as the emotional response of the caregiver to the behavioral and social difficulties of the ill person and to the consequences of the ill person on the household (Caqueo and Gutierrez, 2006). The emergence of community-based method of psychiatric treatment and the decrease in economic resources have led to a shift in the responsibility for the care of the mentally ill individual from the institution to the community. Now the hospitals were relieved of burden, which was passed on the family. The families and the community at large were ill prepared to receive the patients discharged from asylum.
In majority cases family members are now seen as a principal source of support and an important partner in the rehabilitation of the mentally ill in developing cultures with recent estimates indicating that between 1/3 and 2/3 of persons with mental illness currently reside with family members (Gutierrez et al., 2005). Studies in the western culture have shown a moderate level of caregivers’ psychopathology and burden with correlates being clinical characteristic like patients’ symptoms and socio-demographic variables and caregivers’ socio-demographic factors and coping abilities( Awad and Voruganti, 2008). Some studies from sub saharan Africa had suggested high level of burden associated with socio-demographic variables of the caregiver and higher symptoms level in the patient (Ucpong., 2006; Ohaeri and Fido AA., 2001; Martyns., 1992; Yusuf and Nuhu T., 2009).
Although caring for a relative with a major psychiatric disorder imposes some degree of burden on all caregivers, caregivers of patients with schizophrenia and dementia perceive varying rates of burden, ranging from 55% to 90% (Mandelbrote BM and Folkard S,1961). Studies By Russo et al.( 1995); Fuller and Haley, (1995); Dyck et al., (1999); Pruchno and Potashnik., (1989); Perlick et al., (2005); and Gallagher and Mechanic, (1996) also showed that caregivers of patients with schizophrenia or dementia are at increased risk for physical health problems and depression relative to the general population. Haley et al. (1987); Esterling et al., (1994); Kiecolt et al., (1995); and O’Reilly et al., (1996) showed the greater use of health services and psychotropic medications by the caregivers of chronic mental disorders.
A study from Bangladesh reported that the families with schizophrenic patients were most distressed and socially isolated and they had difficulties in the area of household functioning, financial and community problems (Rabbani, 1992).It also showed that the distress felt by the family and the burden and problems due to the patient’s illness were significantly correlated with severity of the patient’s psychopathology (Rabbani, 1992).
Like schizophrenia, mood disorders (bipolar mood disorder, major depressive disorder) are chronic illness with early adult onset. Among the mood disorders, the lifetime risk for bipolar disorders lies between 0.3%-1.5% (Kessler et. al., 1997) and the 12 months prevalence of major depression in the community is between 2%-5% (Alonso et al., 2004) found in different survey in the World. In Bangladesh the prevalence of mood disorders are about 5%. (4.6% major depressive disorder and 0.4% bipolar mood disorders) (Firoz et al., 2006).In contrast to schizophrenia, bipolar disorder has a variable course characterized by recurrent episodes of depression and/or mania. And the Major depressive disorders also have variable courses. Therefore, the experiences and consequences of burden for caregivers of patients with mood disorders may differ from those of the caregivers of patients with schizophrenia.
Mood disorders were identified by the World Health Organization (WHO) in its 1999 annual report as among the most common causes of morbidity and mortality in developed countries (WHO annual report, 1999). Unipolar depressive disorder and bipolar disorder together caused more lost quality of life, lost productivity, and chronic impairment than ischemic heart disease and cerebrovascular disease. In high-income countries, mood disorders were considered to be among the most burdensome diseases when measured by productive years of life lost because of a disability. In the Americas they were ranked as the most burdensome disorder and in Europe as the third most burdensome. Epidemiologic estimates (Angest and Gamma, 2002) suggest that up to 1 million individuals with bipolar disorder live in the UK alone, most of whom will spend many years of their lives dealing with the symptoms and consequences of mania, hypomania and depression (Fukuda et al., 1983).
Mood disorders impose a significant burden on a personal, medical and socioeconomic level (Woods , 2000). Conventionally, the difficulties associated with bipolar disorder on the personal level are highlighted for patients themselves. However for their families, who often end up supporting and caring for them, the consequences of the illness may also be far-reaching and the rate of marital and long-term partnership breakdown is very high ( Goodwin and Jamiso, 1990).
The course of mood disorders lead to many patients working and often needing readmission. This phase was marked by research into factors in the family that aggravated mental illness or caused recurrent episode.
To date, few studies have examined the care giving strains and the associated health and mental health risks among the family and friends of patients with mood disorders. Perlick et al., (2001) found that 93% of caregivers of bipolar patients reported a moderate or higher level of care giving strain, when the patient was admitted to an inpatient unit or outpatient clinic, and 70% continued to report moderate or higher burden 15 months later (Perlick et al., 2001).Higher levels of caregiver burden at the time of the patients’ admission were associated with increased depression and mental health service use among caregivers during the previous 7 months. Caregiver burden also predicted patient’s medication non-adherence 7 months later and recurrence or continuation of a major affective episode within the 15 months following the initial assessment. Other studies have found that caregiver burden is associated with long-term financial difficulties among caregivers, along with marital strain, restrictions in social and leisure activities, and problems with health and mental health ( Reinares and Vieta, 2004; Fadden et al., 1987; Targum et al., 1981; Chakrabarti and Gill., 2002; and Dore and Romans., 2001). Some studies have shown adverse consequences of high levels of burden for both caregivers and patients even after controlling for the severity of patient symptoms (Perlick et al., 2001; Schulz and Beach, 1999). The caregiver’s ability to effectively manage the challenges of caring for a family member with mental illness is a critical component to the health and well-being of both patients and caregivers. Further studies of clinical and psychosocial outcome in bipolar disorder should incorporate measures to reduce caregiver burden. In particular, measures based on more objective assessments of burden associated with care giving are needed. Research is also needed to help identify factors that ameliorate and/or exacerbate the degree of burden experienced by caregivers of patients with bipolar disorder. For example, prior studies found that the level of perceived burden is affected by such factors as appraisal of stress and history of affective disorder in the caregiver (Noh and Aviaon, 1988; Intieri and Rapp, 1994; Wallhagen, 1993; Scazufca and Kuipers, 1999). Interventions that ameliorate these risk factors may minimize the burden associated with care giving.
Difficulties experienced by caregivers often are considered only after the signs of burnout are apparent. Illness frequently has a ripple effect across the entire family group; affecting both the health of other family members and the quality of care they deliver (Stone et al., 2002). Caregivers often spend a disproportionate amount of their emotional, physical, or financial resources on the person requiring care. As time and illness progress, caregivers may find themselves angry or resentful about this toll on their lives, insight into their feelings often serves only to make them feel guilty or shameful about their reactions ( Richard et al., 2000). Research by Saad, et al., (2002) examined the characteristics of caregivers’ coping mechanisms and found that active coping skills and management plans were associated with lower caregiver burden levels. Strong social support has also been correlated with lower caregiver burden- specifically, visits by family and a strong social network were associated with lower levels (Dunkin and Anderson, 1998) . It is necessary to improve quality of life of family caregivers of mood disorders, by early detection of signs and degree of care-giver burden and factors affecting it positively. For this reason it is important to identify the nature and extent of burden among the caregivers of mood disorders. It could have predictive value and this could be useful in the holistic care of the patient and his family and perhaps in primary and tertiary prevention of such problems related with burden.
From clinical experience and personal communication it was seen that the caregivers of patient with mood disorders possess a certain level of burden and thus hamper in the holistic management of the patient. There are some socio demographic factors which might be playing as determining factors to the burden level. It is necessary to find out the relationship between these factors and the burden level. From clinical experience it also noted that there might be a relationship with the disease duration of patient and the caregiver’s burden. To deliver the total care towards the patient with mood disorders it is prerequisite and necessary to determine the burden level among the caregivers and also find out the way to mitigate this burden level. More awareness is required for caregivers’ feelings and burden level. So the researcher felt interest to identify the burden level of the caregivers and to explore the socio demographic risk factors and types of mood disorders of the patient which might be associated with the burden level. From all these perspectives following research questions we intended to solve in this study.
a) Is there any significant difference of level of burden among different types of mood disorders?
b) Is there any possible association of duration and type of mood disorders, on the burden of caregivers?
c) Is there any relationship between socio-demographic variables of the patients and the degree of the burden of the caregivers?
1.2 Justification of the Study
When a person diagnosed as a patient with mood disorder, his family members feel a huge burden on themselves. They are liable to take care of the patient in all dimensions. They provide financial support, emotional support, support regarding the treatment even if they were isolated from the society due to stigma about mental illness. These burden and stress deteriorated their quality of life and consequently the patients are neglected by any means. So, it is necessary to identify the burden of care givers as well as estimate the extent of the burden and by this way we may mitigate the burden and make a holistic care for the patient. It is observed in our country that in almost all sort of patient with psychiatric illness depend on the care of their family members. Moreover it is a common practice and convention that every patient needs a compulsory whole time caregiver from their family during his or her hospital stay, especially in public hospitals. But, at present there is no reported research found on the caregiver burden of the patients with mood disorders in Bangladesh. The findings of current study will provide baseline information to stimulate the further research on this field.
Burden of caregivers of patients with mood disorders is significantly associated with the duration and type of mood disorders.
To determine the level of burden of caregivers of patients with mood disorders attended in a tertiary care hospital
1. To identify the possible association of duration and type of mood disorders, on the burden of caregivers.
2. To find out relationship between socio-demographic variables of the subjects and the degree of the burden of caregivers.
1.5 Operational Definitions
Caregiver: A person who is responsible for attending to the needs of a patient. In this study he/she is the person who is responsible for the care giving of the patients with mood disorder. The defined caregiver may be a family member or friend of the patient and who stayed at 6 months after the initiation of patient’s symptoms and they carry the financial, emotional, and burden of patient’s in all aspects.
Burden: The emotional, social, and financial stresses that caring for a relative or friend with mental illness imposes on the caregiver (Hoenig et al., 1967). Subjective burden is defined as the emotional response of the caregiver to the behavioral and social difficulties of the ill person and to the consequences of the ill person on the household (Caqueo-Urı´zar and Gutie´rrez-Maldonado (2006).
Mood disorder: The criterion sets for the disorders of mood according to the DSM IV . In most of the cases it requires presence or absence of the mood episode. Common mood disorders are Depressive disorders, Bipolar disorders, mood disorders due to a general medical condition etc.
Age: The age was recorded as age on the day before last birth day in completed years, as stated by the subjects (Bangladesh Bureau of Statistics, 2002).
- Unmarried: An individual who had not been married.
- Married: The member who was currently married.
- Separated: Consensual or intentional physical separation between husband and wife where both partners were living apart.
- Divorced: When husband and wife had been legally separate and will be considered as divorced.
- Widow/Widower: A widow is a woman whose spouse has died. A man whose spouse has died is a widower.
Family: A group of biologically related individuals living together and taking meal from a common kitchen. That is subdivided into:
- Nuclear family : Husband, wife and any dependent offspring living in a common household.
- Extended (joint) family : Tow or more groups of kin linked by blood ties (traced either through the father or mother) that have common rights and obligations, and its members in the same household.
Occupation: Any income generated activity on the part of the patients, as a means of livelihood. The occupations were categorized into the following groups (Bangladesh Bureau of Statistics, 2002).
- Student: a person who is studying in any educational institute.
- Businessman: a person engaged in commercial or industrial business
- House-wife: A married woman not working outside the home but involved with family and household activities.
- Service: An individual working for a public or private agency and receiving a stipulated salary or remuneration (Bangladesh Bureau of Statistics, 2002).
- Retired: An individual currently retired from work either private or government.
Level of education:
- Illiterate- A person without any formal education or schooling and unable to read or write one’s name.
- Literate- An individual with the ability to read and write a letter with adequate knowledge and comprehension (Bangladesh Bureau of Statistics, 2002). The literate groups were again subdivided according to their level of education.
- Primary- Class-I-V.
- Secondary- Class VI – X.
- SSC- Secondary school certificate
- HSC- Higher secondary certificate
- Graduate- Equivalent to a degree level, for example Honours.
- Postgraduate- Higher education than degree level for example M.A, M.Sc, M.Phil, PhD etc.
Duration of illness: Duration of illness in year following diagnosis of disorders.
Family history of psychiatric illness: Any history of mental illness among first-degree relatives.
Monthly income: Monthly income defined as the amount of money earned in a month. Family monthly income means the sum of total monthly earned money by all the members of a family. Personal monthly income means the amount of money earned by a specific person.
Literature search strategy
Possible literature search was done by library work, and med line search. Personal communication was done in a few circumstances. Library of Bangabandhu Sheikh Mujib Medical University, National Institute of Mental Health library and National library, were searched also with the light of objectives of study. Researcher also searched through HINARI (Health Inter Network Access to Research Initiative) and PUB Med Search engine for online literature.
Global scenario of Mood disorders
Mood disorders are major cause of suffering for patients, but the burden it indirectly imposes upon families and caregivers is a matter of increasing clinical concern. Caregiver burden has been described as ‘the presence of problems, difficulties or adverse events which affect the life (lives) of the psychiatric patient's significant other(s), e.g. members of the household and/or the family’ (Platt, 1995), although significant others can be considered to extend to include close and supportive friends. It is known that people who care informally for those with long-term illnesses suffer from increased levels of stress, depression and ill-health (Loweryetr et al., 2000; Glaser et al., 2000; Da Roza and Cowan, 2001; Brodaty and Green, 2002). Despite the extent of the impact of mood disorder, very little work has been done to define more precisely the caregiver burden associated with the illness compared with the relatively extensive literature on schizophrenia and dementia.
A recent US survey using the Mood Disorders Questionnaire suggests that the prevalence of bipolar disorder may be higher than previously estimated. The results of the community-based survey found that 3.7% of 125 000 adults screened probably had bipolar I or II disorder (Hirschfeld et al., 2003). In the United States alone, bipolar illness accounts for more than 16 million outpatient physician visits each year (Narrow et al., 1993 ) .
In a 20-year prospective follow-up study in the US, Judd et al., (2003) found that patients with either bipolar I or II disorder experience depressive symptoms for longer periods than manic/hypomanic symptoms (3:1 for patients with bipolar I disorder and 37:1 for patients with bipolar II disorder). However, although probably shorter in cumulative duration, manic episodes usually require a period of hospitalization; can be devastating to personal relationships, career prospects, and financial independence; and carry an increased risk of aggression towards caregivers and self. Even if bipolar symptoms spontaneously subside, such as during untreated inter-episode periods, impaired functioning persists for many patients ( Dion et al., 1988). This loss of social functioning exacts a considerable toll on caregivers and families that, in turn, can adversely affect the clinical outcome for the patient ( Chakrabarti et., 1992; McPherson et al., 1992; Perlick et al., 1999 )
Why is informal caregiver burden an important issue
We need to better understand caregivers’ views and personal perceptions of the stresses and demands arising from caring for someone with bipolar disorder. This will be necessary in order to develop practical, appropriate, and acceptable interventions, and to improve the training of professionals working with caregivers. It is likely that there are complex inter-relationships between the breakdown of informal caring relationships, increasing social instability, the need for input from formal/professional caregivers (including psychoeducation), and health and economic outcomes of care. If caregivers’ beliefs about bipolar disorder are primarily based on cultural as opposed to medical models of illness, we need to make professionals aware of this when offering psychoeducation and support to individuals and groups of caregivers.
If we are to introduce suitable psychosocial interventions for caregivers then we need to know more about their experiences. In the area of Alzheimer's disease and dementia, interventions with informal caregivers have been evaluated (Pusey and Richards, 2001). In order to understand how and why these work, we need to be aware of their different approaches.
Charlesworth (2001) usefully differentiates between interventions that aim to have an impact directly on caregivers from those that use the caregiver as an ‘agent of change’ for the person with dementia and those that combine these approaches. For example, interventions may target caregiver self-care (e.g. social support, stress management), caregiver appraisal of the person they care for (e.g. providing information about the illness, or modifying attributions and beliefs about the illness and locus of control, etc.), or promote caregiver skills (e.g. cognitive stimulation, pleasurable activities, behavior modification).This conceptualization could be usefully transferred to the field of bipolar disorders, allowing us to develop psychosocial interventions with informal caregivers. However, before this is possible, it would be helpful to develop a thorough and in-depth understanding of the nature of caregiver burden in relation to bipolar disorders. When conceptualizing caregiver burden we need to recognize that caring roles are usually an integral part of family life. Parents generally expect to have to care for their children, children are dependent upon their parents or guardians, and many spouses care for their partners. Thus, a level of caregiver burden usually exists within family roles and relationships, and the implicit or explicit obligations these carry with them. These are, in turn, shaped by cultural and social class expectations. For example, in a relationship characterized by traditional gender roles, the care burden experienced is likely to differ substantially depending on whether the husband or the wife is the patient.
Burden is also related to the development and nature of a person's self-identity in their role as caregiver. Most people who view themselves as informal caregivers have experienced an important transition in which the relationship of ‘carer–cared for’ has become superimposed onto existing spousal, family, or friendship relationships. These qualitative changes in the relationship between informal caregiver and patient are likely to be associated with specific symptoms, key illness-related events, and the stage of the disorder, yet very little is known about the factors mediating these changes with respect to bipolar disorder. Opie (1992) identifies three ways in which people take on the identity of informal caregivers: (i) in the context of positive long-term relationships, (ii) as a result of feelings of duty and obligation, and (iii) in relation to strong feelings of anger and resentment. Each of these situations probably needs to be approached in a different way rather than via a generic approach, but can only be done if the patterns and their various combinations are recognized.