Factorspredicting health status of stroke care givers in thai nguyen, vietnam

This study aimed to examine health status of stroke caregivers, and identify whether caregiver's age, caregiver's income, patient's functional status, caregiver burden, social support, a

FACTORS PREDICTING HEALTH STATUS OF STROKE

CAREGIVERS IN THAI NGUYEN, VIETNAM

NGO XUAN LONG

A THESIS SUBMITTED IN PARTIAL FULFILLMENT

OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY

(NURSING) FACULTY OF GRADUATE STUDIES

MAHIDOL UNIVERSITY

2017

COPYRIGHT OF MAHIDOL UNIVERSITY

Thesis entitled

FACTORS PREDICTING HEALTH STATUS OF STROKE

CAREGIVERS IN THAI NGUYEN, VIETNAM

Faculty of Graduate Studies Doctor of Philosophy of Nursing

Mahidol University Faculty of Nursing & Faculty of Medicine

Ramathibodi Hospital Mahidol University

Entitled

FACTORS PREDICTING HEALTH STATUS OF STROKE

CAREGIVERS IN THAI NGUYEN, VIETNAM

Was submitted to the Faculty of Graduate Studies, Mahidol University

For the degree of Doctor of Philosophy (Nursing)

on August 30, 2017

Prof Patcharee Lertrit, MD Prof Dr Rutja Phuphaibul

Ph.D (Biochemistry) Ph.D (Nursing)

Dean, Faculty of Graduate Studies Program Director

Mahidol University Doctor of Philosophy Program in Nursing

(International and Collaborative with Foreign University Program)

Faculty of Medicine Ramathibodi Hospital School of Nursing Ramathibodi Hospital Mahidol University

FACTORS PREDICTING HEALTH STATUS OF STROKE CAREGIVERS IN THAI NGUYEN, VIETNAM

NGO XUAN LONG 5736975 NRNS/D

Ph.D (NURSING)

THESIS ADVISORY COMMITTEE: WANPEN PINYOPASAKUL, Ph.D (NURSING), KANAUNGNIT PONGTHAVORNKAMOL, Ph.D (NURSING), RUNGNAPA PANITRAT, Ph.D (NURSING)

ABSTRACT The number of stroke survivors requiring family care in Vietnam have been rising dramatically This study aimed to examine health status of stroke caregivers, and identify whether caregiver's age, caregiver's income, patient's functional status, caregiver burden, social support, and family conflict could predict health status of the Vietnamese stroke caregivers A descriptive study was conducted in Thai Nguyen National General Hospital, Vietnam from December 2016 to March 2017 A total of 126 stroke caregivers were recruited from three outpatient clinics in the hospital Data were collected by using a demographic questionnaire, the Modified Barthel Index, Zarit Burden Interview Scale, Multidimensional Scale of Perceived Social Support, Family Caregiver Conflict Scale, and the Short Form-36 Health Survey Descriptive statistics and stepwise multiple regression were employed to analyze the data.


The findings revealed that the majority of stroke caregivers were females (71.4%) Most of them were married (92.2%), and more than half were related to stroke patients as their spouses (53.3%) Overall, the health status of stroke caregivers was at a moderate level Caregiver burden, patient’s functional status, caregiver’s age, and social support together explained 80.3% of variations in the health status of stroke caregivers (R2 = 803) Caregiver burden was the strongest predictor of health status of these caregivers (β = -.56.7, p < 001)

Based on the findings, nurses should take caregiver’s age, functional status of stroke survivors, caregiver burden, and social support into consideration when preparing family caregivers to provide care for stroke survivors To reduce perceived caregiver burden, family support interventions are greatly suggested to enhance heath status of the Vietnamese stroke caregivers

KEY WORDS: STROKE CAREGIVER/ HEALTH STATUS/ VIETNAM

222 pages

1.7 Expected Outcome and Benefits 12

2.1 Stroke or Cerebrovascular Disease 15

2.1.2 Prevalence and incidence of stroke 17

2.1.4 Impacts of stroke on stroke patients 20 2.2 Overview of Vietnam and Stroke Care in Vietnam 22 2.2.1 Description of Vietnam and Thai Nguyen 22 2.2.2 Health care system in Vietnam 24

2.3 Family Caregivers of Stroke Patients 30 2.3.1 Definitions of family caregiver of stroke patients 30 2.3.2 Effects of caregiving on caregiver of stroke patients 32

CONTENTS (cont.)

Page

2.4 Health Status of Stroke Caregivers 34 2.4.1 Concepts of health status 34 2.4.2 Measurements of health status 36 2.4.3 Studies of health status of stroke caregivers 40

2.5.1 The conceptualization of factors influencing caregiving outcomes 46 2.5.2 The selection of theoretical framework 47

2.5.4 Studies used Stress-Appraisal model 53 2.6 Factors Associated with Health Status of Stroke Caregivers 55 2.6.1 Characteristic of stroke caregivers 56 2.6.2 Patient’s functional status 58

4.1 Characteristics of Stroke Caregivers and Stroke Patients 82 4.2 Description of Health Status of Stroke Caregivers 89

CONTENTS (cont.)

Page

4.3 Description of Patient’s functional status, Caregiver Burden,

4.4 Relationship between Caregiver’s Age, Caregiver’s Income, Patient’s

Functional Status, Caregiver Burden, Social Support, Family Conflict

and Health Status of Stroke Caregiver 98

4.5 Prediction of Health Status of Stroke Caregiver 101

5.1 Demographic Characteristics of Family Caregivers 103

5.2 Demographic Characteristics of Stroke Patients 106

5.3 Levels of Health Status of Stroke Caregivers 107

5.4 Factors Predicting Health Status of Stroke Caregivers 109

5.6 Strengths and Limitations of the Study 122

CHAPTER VI CONCLUSION AND RECOMMENDATIONS 124

Appendix A List of Experts for Content Validity 158

Appendix B List of Instrument Translators 159

Appendix D Letters for Asking Permission for Data Collection 161

Appendix E Hospital Permission for Data Collection 163

Appendix F Permission for Using Instruments 165

Appendix G Research Instruments (English Version) 174

Appendix H Participant Information Sheet 193

Appendix J Research Instruments (Vietnamese Version) 197

CONTENTS (cont.)

Page

Appendix K Testing Assumption of Multiple Regression Analysis 219

LIST OF TABLES

3.1 The constant C related to error type I and type II 69 4.1 Demographic characteristics of family caregivers 83 4.2 Information related to the caregiving situation 85 4.3 Demographic characteristic of stroke patients 87 4.4 Range, mean and standard deviation of health status of stroke caregivers 90 4.5a Frequency, percentage, range, mean and standard deviation of activities

4.10 Relationship between patient’s functional status, caregiver burden,

social support, family conflict and health status of stroke caregivers 100 4.11 Correlation matrix and correlation between predictors and health status

4.12 Stepwise Multiple Analysis summary of variables predicting health

LIST OF FIGURES

2.2 Structure of the Vietnamese health care system 27

2.3 The conceptual model of Yates et al (1999) 52

2.4 Conceptual-Theoretical-Empirical structure of the study 53

3.1 The SF-36 measurement model of Ware et al (1994) 76

CHAPTER I INTRODUCTION

1.1 Background and Significance of the Study

Stroke or cerebrovascular disease is called a “brain attack” It refers to an intracerebral hemorrhage or interruption of blood flow to the brain, resulting in transient or permanent neurological injury or death (American Heart Association, 2014) Stroke is a leading cause of death and long-term impairments and disabilities (Mukherjee & Patil, 2011; Roger et al., 2012) It poses the high levels of strain, perceived burden, anxiety, and dissatisfaction with life of caregivers (Gillespie & Campbell, 2011) The World Health Organization (WHO) (2014) found that more than

15 million new stroke cases annually in the world, with a total about 5 million people permanently disabled, 87 % occurred in low and middle-income countries like Vietnam In America, approximately 795,000 persons experience a stroke each year (American Heart Association, 2014), while in Europe, the annual standardized incidence for stroke varied from approximately 141 to 373/100,000 population per year (Vasiliadis, 2013) Additionally, stroke has been among the top 4 leading causes

of death in Asia area (Kim, 2014) In the context of Vietnam, the number of patients with stroke is constantly increasing each year (Tirschwell et al., 2012) Basing on document of internal circulation only in 115 hospital of People of Ho Chi Minh showed that there were 1,210 patients admitted to the hospital with stroke in 2005, and this figure was increased to appropriate 8,000 patients in 2013 (Chuong et al., 2013) Most recently, the Ministry of Health of Vietnam (MOH) (2013) found that in 2013 about 230,000 stroke cases annually accounting for 110,000 deaths and 1.7 disability-adjusted life years (DALYs) lost, and its estimated cost for the Vietnamese health system was US$ 48 million per year

Stroke can affect individuals of any age, but it largely affects the elderly (Meschia et al., 2014) A report of Go and colleagues (2014) showed that about 75%

of stroke patients are 65 years old and older (Go et al., 2014) Thinh and colleagues

(2008) conducted a research entitled "National hospital survey of stroke care in Vietnam" and found that about 62.4 % of stroke patients are 60 years old and over According to the General Statistics Office Vietnam (2013), the older population in Vietnam is expected to increase In 2009, people aged over 60 comprised nearly 6.4%

of the population (7.66 million in a population of 85.80 million), and this proportion is predicted to increase to 11.64% of 96.18 million by 2020 The rapid growth in the number of older people also leads to the prevalence rate of stroke patients greatly increasing in the Vietnamese society

Although advances in the stroke treatment, rehabilitation, and health care, 40% to 60% stroke survivors experienced moderate-to-severe disabilities (loss of mobility, impaired speech, and cognitive impairment) that require the special rehabilitative care (Go et al., 2014; Jaracz et al., 2014; Skibicka et al., 2010) Carod-Artal and Egido (2009) determined that a lot of stroke survivors have experienced significant hemiparesis (50%), inability to walk without support (30%), dependence in activities of daily living (ADL) (26%), motor aphasia problem (19%), and depressive symptoms (35%) Noticeably, approximately 40% stroke survivors have limited achievement in approach rehabilitation goals associated to movement and communication (Ostwald et al., 2009) As a result, stroke survivors really depend on their families for ongoing care at home Numerous studies have estimated that up to 60-80% of stroke survivors who are discharged from the hospital will return home and require long-term care from family caregivers to gain optimal recovery post discharge (Costa et al., 2015; Hayashi et al., 2013; Niyomthai et al., 2010; Tirschwell et al., 2012)

The effect of a stroke diagnosis not only impacts the person with the disease, but also leads to several issues for their family caregivers, their family members, communities and society (Baumann et al., 2011; Costa et al., 2015) The gravity of this impact is because the majority of supports (physically and mentally) for stroke patients in their home came from their family members Family members of people with stroke survivors usually experience more stressors directly and indirectly, and quality of life is lower than the general population, with higher risks of depression (Chen & Botticello, 2013) Caregivers of people with stroke survivors carry the entire caregiving burden, and as a consequence, they suffer with physical health consequences and financial hardship (Bhattacharjee et al., 2012) Stroke caregivers

also experienced a significant lower health status, as evidenced by momentous decreases in the social functioning dimension (Guo & Liu, 2015; Nelson et al., 2008)

In addition, stroke caregivers have been known to experience limitation leisure activities, poorer emotional function compared to the caregivers of patients with neurological disorders (Bulley et al., 2010; Chow, Wong, & Poon, 2007)

Family caregivers, therefore, play an important role to provide support, physically, psychologically, and financially for stroke survivors The literature showed that providing care to stroke survivors with poor health conditions may cause many difficulties to the family caregivers and limitation in performing self-care (Baumann

et al., 2011; Choi-Kwon et al., 2005; Lutz et al., 2011; Tsai et al., 2015) According to Asiret and Kapucu (2013), caring for stroke survivors is not limited to the personal care as bathing, dressing, feeding, but includes administering medication, financial management, encourage the sense, planning social services, sharing finances and house As a result, the caregivers can affect their emotional, physical, mental, and social well-being

Worldwide, many studies have reported a decline in physical health and an increase in psychological strain and fatigue of caregivers of stroke patients since undertaking caregiving role (Carod-Artal et al., 2009; Em et al., 2017; Kruithof et al., 2016; Parag et al., 2008; Vincent et al., 2009) In addition, previous studies related to family caregivers of stroke survivors also have shown that providing long-term care for stroke patients may be a source of chronic stress, disruption in family routines, the changes in their daily living and many other negative consequences (Denno et al., 2013; Greenwood et al., 2008; Pang, 2014; Rigby, Gubitz, & Phillips, 2009) According to Franzen-Dahlin and colleagues (2007), spousal caregivers of stroke survivors have been shown to be more stressful than other informal caregivers Increased strain may be related to physical and psychological exhaustion as well as emotional demands of caregiving on the health of caregivers Baumann and colleagues (2011) noted that the disruption in family routines, changes in daily living, and increased strain of stroke caregivers was caused by dedicating more time and energy

to help improve the conditions of stroke patients after they discharge from the hospital

to their home For this reason, stroke caregivers may suffer health problems as a direct

result from tend to overlook taking care for themselves (Asiret & Kapucu, 2013; Baumann et al., 2011; McCullagh et al., 2005; Ogunlana et al., 2014)

By and large, in the health literature, health status is increasingly referred

to as health-related quality of life (HRQoL) (Bowling, 2013) Health-related quality of life, like as a subjective sense of well-being or like subjective health status, is defined

as a broad, multidimensional construct referring to those aspects of people’s lives that relate to their health (Salter et al., 2008) From a health viewpoint, HRQoL has been said to refer to the optimal levels of physical, mental, role (e.g worker, caregiver, parent, etc.) and social functioning, including relationships, life satisfaction, perceptions of health, capability, and well-being, mirroring the World Health Organization's (WHO, 1946) definition of health as “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity”, and

as the impact of disease and treatment on disability and daily functioning (Bowling, 2013) In the review, there is a great deal of overlap in the definitions of health status and health-related quality of life (Breek et al., 2005; Zubaran et al., 2008) In this study, health status refers to caregiver’s perception of their own health involving physical, mental, and functional well-being (Ware & Sherbourne, 1992)

Several reviews of existing research on health status of stroke caregivers have notified that most of the caregivers evolve health problems during to carry out their caregiving duties (Balhara et al., 2012; Carod-Artal et al., 2009; Persson et al., 2015; Watanabe et al., 2015) Persson and colleagues (2015) found that the husbands and wives of stroke survivors often endure long-term physical and mental health problems Asiret and Kapucu (2013) found that caregivers experienced some physical health problems such as stomach ulcer (27.7%), disc herniation (38.3%), and headache (17%) as a result of caring for stroke survivors They said that caregivers perceived physical health problems were related to completing their duties (47.8%), and their sadness and stress (63.6%) Watanabe and colleague (2015) found that 60% of caregivers had difficulty mentally relaxing and about 52% to 55% of stroke caregivers suffer some forms of emotional distress (Tang et al., 2011) In addition, approximately 50% of caregivers of stroke patients reported greatly less time for social activities and leisure time such as outings with friends or visiting somewhere (Parag et al., 2008)

Upon describing the long-term consequences disabilities of stroke survivors encounters their daily living The family caregivers played caregiving role extremely important and also a pivotal role in a long period of time recovery and rehabilitation of stroke patients However, this caregiving role can make more stressful and increase burden on caregivers and it, simultaneously, can affect a negative physical and psychological consequence on stroke caregivers' well-being (Ogunlana et al., 2014)

According to literature review, many factors associated with health status

of stroke caregivers have been identified Several stress variables related to health status of stroke caregiver have been recognized by individual characteristics of caregivers such as age, income, gender, educational level (Carod-Artal et al., 2009; Godwin et al., 2013) and characteristics of patients such as functional status, cognitive impairment, depression (Nelson et al., 2008; Othman et al., 2014) In addition, many researchers who conducted quantitative studies also indicated that caregiver burden (Carod-Artal et al., 2009; Chang et al., 2010; Zorowitz, Gillard, & Brainin, 2013), social support (Lui et al., 2012; Pellerin, Rochette, & Racine, 2011), caregiver depression (Balhara et al., 2012; Chen & Botticello, 2013), coping strategies (Yu et al., 2013), and family conflict (Clark et al., 2004; Kwak, Ingersoll-Dayton, & Kim, 2012) influenced health status of stroke caregivers In this study, the researcher focused on examining factors including: 1) caregiver’s age, 2) caregiver’s income, 3) patient’s functional status, 4) caregiver burden, 5) social support, and 6) family conflict as they are potentially predicted health status of stroke caregivers in Vietnam

The characteristic of caregiver such as age was found affected health status

of stroke caregivers Godwin and colleagues (2013) conducted a study with 159 survivors of stroke and their spousal caregivers, and they found that older age were associated with lower physical health of caregiver Carod-Artal et al (2009) also found that caregiver’s age significantly correlated (p = 0.001) with health status of stroke caregivers measured by EuroQol-5D Nelson et al (2008) and Huang et al (2009) said that increased caregiver’s age were associated and predicted decreased health of stroke caregiver Interestingly, Yu et al (2013) and McCullagh et al (2005) found that there was no relationship between caregiver’s age and physical component summary and mental component summary of stroke caregivers

Apart from age, caregiver’s income is also related to the health status of stroke caregivers Yang and colleague (2012) showed that lower household income and loss of employment due to caregiving added to caregivers’ susceptibility and vulnerability to perceive the weight of the burden and finally result in reduced physical health of caregiver (Yang et al., 2012) Huang and colleagues (2009) conducted a study with 103 informal caregivers in Taiwan They showed that caregivers who had lower household incomes had the more depressive symptom lead

to decrease mental health This is appropriate with the findings from the study investigated by Saunders (2010) However, Yu and colleagues (2013) found that caregiver income was not associated with caregiver’s health status

According to Yu et al (2013), the level of decrease in functional status of stroke patients was negatively influenced in caregiver’s health status Caregivers deal with a lot of difficulties caused by assisting stroke patients with their severe disabilities and poor cognition (Hung et al., 2012; Othman et al., 2014) Van Heugten

et al (2006) said caring for stroke survivors is not limited to eating, sleeping, bathing, displacing, but includes financial management, arranging the environment for safety, encourage the sense or emotional support when stroke patients are moody, aggressive

As a result, the caregivers intensify responsibilities and increase burdens if caregivers are unable to arrange resources and time appropriately, they may have more and more accumulations the stressful and pressure, leading to depression, anxiety, lack of take care for themselves, not maintain bodily balance, and exhaustion all of which could affect their health status (Vincent et al., 2009) Interestingly, Carod-Artal and colleagues (2009) found no significant patient’s functional status with perceived health status of stroke caregivers Nelson et al (2008) also noted that declining patient neurological functioning did not predict health status of stroke caregivers

Burden of care of stroke patients impacts the physical as well as psychological well-being of the caregiver adversely (Das et al., 2010; Gbiri, Olawale, & Isaac, 2015; Kumar, Kaur, & Reddemma, 2015) One major cause developed health problems of caregiver is the burden In the literature review, the large research on family stroke caregivers has consistently demonstrated that increased burden of caregivers relates to decreasing their mental and physical health (Akosile et al., 2011; Kumar et al., 2015; Martinez-Martin et al., 2008; Morimoto, Schreiner, & Asano, 2003), particularly

among stroke caregivers (Carod-Artal et al., 2009) Rittman and colleagues (2009) found that reduced physical and mental health of caregiver is associated with great caregiver burden This finding is consistent with previous reports in developed countries (Akosile et al., 2011) and other cultural settings (Asiret & Kapucu, 2013)

Previous studies also have shown that the positive effects on social support, which includes emotional support and physical help, on psychological well-being of caregivers (Clay et al., 2013; Cumming et al., 2008; Kuscu et al., 2009; Pesantes et al., 2017) However, the relationship between caregiver's physical health and social support is not clearly documented in the literature (Chen et al., 2010; Yu et al., 2013) Kuscu and colleagues (2009) found that perceived social support associated with psychological well-being of family caregivers In addition, a study in Taiwan said that family support was a significant predictor of caregiver's health status (Yeh & Chang, 2012) Interestingly, Yu et al (2013) recruited 121 caregivers of stroke survivors in China to study the correlation of social support and caregiver's health status The researchers found that social support had no direct effect on the health status of stroke caregivers This result is consistent with the findings from study conducted by Gräsel et al (2005) and Chen et al (2010)

The shifts of roles of family members for stroke patients and disruptions in interpersonal relationships can undermine family stability, potentially resulting in family conflict and other signs of family stress (Kwak et al., 2012; Scharlach & Dalvi, 2006) Besides, caregivers may also experience stress caused by being confused about their roles as they lack knowledge or skills in caregiving, or they may play too many roles, which leads to conflicts with other relatives or family members due to incongruent needs (Clark et al., 2004) This affects their daily living, occupation, social participation, and economic status, and it can bring about changes in health status of stroke caregivers (Clark et al., 2004)

Currently, there is limited knowledge about the health status among Vietnamese family caregivers of stroke patients Essentially, maintaining or improving health status of stroke caregivers is important in management of families of people with stroke The issues of health status of stroke caregivers remain unaddressed within the Vietnam health care system Noticeably, there are many studies conducted in the West and in some Asian countries such as American, Brazil, Sweden, India, Japan, Thailand,

and China affirming the existence of health problems among caregivers of patients with stroke (Costa et al., 2015; Kumar et al., 2015; Pai & Tsai, 2016; Persson et al., 2015; Savini et al., 2015; Watanabe et al., 2015) However, most of these investigations have been conducted outside Vietnam It still remains a big gap of understanding regarding health status of stroke caregivers and its associated factors between Vietnamese caregiver with stroke survivors Lack of knowledge and understanding regarding these issues is one of the barriers that could impede health care providers, nurses in particular, from providing effective care to both caregivers and their care recipients Understanding the factors that predicting health status of stroke caregivers would help health care providers identify and develop the interventions program to target caregivers at risk for physical or mental health problems.

1.2 Research Questions

The research questions guiding this study were as follows:

1 What is the level of health status of stroke caregivers in Thai Nguyen, Vietnam?

2 Are caregiver’s age, caregiver’s income, patient’s functional status, caregiver burden, social support, family conflict the predictors of health status of stroke caregivers in Thai Nguyen, Vietnam?

1.3 Purposes of the Study

The purposes of this study were as follows:

1 To describe the health status of stroke caregivers in Thai Nguyen, Vietnam

2 To investigate the influence of caregiver’s age, caregiver’s income, patient’s functional status, caregiver burden, social support, family conflict on health status of stroke caregivers in Thai Nguyen, Vietnam

1.4 Research Hypotheses

The hypotheses for this study were as follows:

1 Caregiver’s age, caregiver’s income, patient’s functional status, caregiver burden, social support, and family conflict are associated with health status

of stroke caregivers in Thai Nguyen, Vietnam

2 Caregiver’s age, caregiver’s income, patient’s functional status, caregiver burden, social support, and family conflict can co-predict health status of stroke caregivers in Thai Nguyen, Vietnam

1.5 Research Framework

This study was guided by a Stress-Appraisal Model (SAM) of Yates, Tennstedt, and Chang (1999) Yates and colleagues (1999) have developed this model based on the background of both the Stress Process Model presented by Pearlin and colleagues (1990) and the Appraisal Model developed by Lawton and colleagues (1989, 1991) The Stress Process Model (SPM) of Pearlin and colleagues (1990) is derived from caregiver stress as a consequence of a caring process for individual with Alzheimer's disease The model focuses attention on the ways in which potentially stressful occurrences interact with each other and with intervening factors, such as personal or environmental resources, to intensify, and sometimes to reduce, stress effects and determine health outcomes for the caregiver The relationships between factors and stress are evaluated in terms of changing and developing over time The model has four major factors, each of which is made up of multiple components: contextual or background information, stressors, mediators, outcomes Pearlin and colleagues (1990) indicated that burden is viewed as “subjective primary” stressor and affected by background and contextual variables of caregivers such as age, gender, educational level, socioeconomic characteristics, and caregiving history Burden in this model acts as an independent and predictive variable It has directly affected outcomes such as physical and mental health of caregiver, besides, indirectly through secondary stressor (family conflict, economic problems, self-esteem, and competence) The mediators such as coping and social support may serve both to lessen the effected

of stressors and to block contagion of stressors and explain different outcomes experienced by caregivers in dissimilar ways

The Appraisal Model, which was fundamental to the SAM, was developed

by Lawton and colleagues (1989, 1991) This model was developed based on Stress, Appraisal, and Coping model of Lazarus and Folkman (1984) The researchers designed the model focuses on the relationships of stressors and resources of negative caregiving appraisal among caregivers Caregiving appraisal in the model involves caregivers, psychological factors, care receivers, and other environmental that has been viewed as a dynamic process The researchers grouped subjective and interpretive variables together into the category of “appraisal” Then, they added this appraisal factor to the basic factors of the stress model They defined that caregiving appraisal refers to “all cognitive and affectional appraisals and reappraisals of the potential stressor and the efficacy of one’s coping effort”

Yates and colleagues (1999) built on the strengths of both the stress and appraisal model Several modifications of Pearlin et al (1990) model has been made to incorporate adaptations derived from the Lawton et al (1989, 1991) model A modification from the stress process model of Pearlin and colleagues (1990) considers

"overload" in primary stressor as a secondary appraisal in Yates and colleagues (1999) The caregivers, in determining their levels of overload, have assessed their own situations and determined how they feel about it As such, overload can be compared to what others have called subjective burden, and can be defined as the feeling expressed by the caregiver in regard to energy level, satisfaction with the level

of care provided and having enough time to do everything necessary, including time for one’s self (Pearlin et al., 1990)

The model of Yates et al (1999) attempted to integrate both these models

in an approach which evaluated caregiver outcomes In the model, the authors emphasize the appraisal of caregivers in the stressful situations and their responses to the stressful situations and taking account of their coping resources available This model includes five domains: primary stressors, primary appraisal, mediators, secondary appraisal, and outcome In each domain comprises multiple components The first is the primary stressors measure of need for care: cognitive impairments, problem behaviors, and functional disability The second is the primary appraisal

represent both objective measures of caregiving work and subjective appraisal of caregiver: hours of informal care provided The third is mediators or resources: personal and social resources mitigate an effect of stressors, formal services, emotional support, and relationship with the care receiver, caregiver feelings of mastery The fourth is the secondary appraisal represents the perception of caregiver in daily caregiving experiences as overloaded or burden The fifth is an outcome: caregiver well-being related to depression

According to literature review, previous researchers have used Stress Appraisal Model as a framework in their studies Casado and Sacco (2011) conducted

a study to identify the correlation between caregiver burden and some factors such as family-support network, self-efficacy of care management They used a Stress-Appraisal Model of Yates et al (1999) for guiding their study Similarly, Chappell and Reid (2002) investigated burden and well-being among caregivers for dementia in British Columbia, Canada and used Yates and colleagues (1999) model as a framework to support for their study

In this study, the researcher examined the relationship among variables and using the model of Yates et al (1999) and literature review as a conceptual framework including: background and context (caregiver’s age, caregiver’s income); primary stressor (patients’ functional status); mediators (social support and family conflict); secondary appraisal (caregiver burden) and health status of stroke caregivers

in Yates et al (1999) as a caregiving specific distress outcome The researcher hypothesizes that background and context, primary stressor, secondary appraisal, and mediators were associated with health status of stroke caregivers (Figure 1.1)

Figure 1.1 Research framework

1.6 Scope of the Study

This study examined health status of stroke caregivers and investigating the effect of caregiver’s age, caregiver’s income, patients’ functional status, social support, caregiver burden, family conflict on health status of stroke caregivers Data were collected from both male and female family caregivers, aged 18 years and over, who provided care to patients with stroke recruited from Neurological Clinic and Outpatient Department Unit as well as Department of Rehabilitation at Thai Nguyen National General Hospital in Thai Nguyen province, Vietnam The researcher collected data from November 2016 to February 2017

1.7 Expected Outcomes and Benefits

The findings were expected to provide the understanding of factors that influence health status of stroke caregivers in order to help health care providers identify and develop an effective intervention program to target reducing the risk factors effect on physical or mental health of caregivers of stroke patients In addition, the findings from this study contributed to knowledge development in nursing science

Health status of stroke caregivers

Social support

Family conflict

Caregiver burden

1.8 Definition of Terms

The definitions of variables examined in this study can be summarized as follows:

Health status refers to stroke caregiver’s perception of their own health

status involving physical, mental, and functional well-being as assessed by using the Short-Form Health Survey (SF-36) designed by Ware and Sherbourne (1992)

Caregiver burden refers to a stroke caregiver’s subjective perception of

overload in one or more of the four perspectives of physical, psychological, social, and financial spheres through the caregiving process Caregiver burden was evaluated in this study as the score achieved by the caregiver on the Zarit Burden Interview (ZBI) (Zarit et al., 1985)

Caregiver’s age refers to the length of time that stroke caregiver has been

alive, measured in years It was calculated by minus the present year with the year of birth It was measured by demographic characteristics questionnaire

Caregiver’s income refers to the amount of money in Vietnam dong

calculated to the (US$) that a stroke caregiver received per month It was measured by demographic characteristics questionnaire

Patients’ functional status refers to the ability of stroke patients to

perform activities of daily living such as bathing, dressing, and other independent living skills Activities of daily living include the ability to be mobile, dress, feed, keep oneself clean and perform toileting functions Functional status defined in this study as the score obtained on the Modified Barthel Index (MBI), by Shah et al (1989)

Family conflict refers to a disagreements within the larger family system

about various issues and/or needs (physical or emotional) arising during stroke recovery (Clark et al., 2003) Family conflict in this study was measured by using Family Caregiver Conflict Scale (FCCS), developed by Clark and colleagues (2003)

Social support refers to the availability of emotional, practical, and

informational support from family and friends, and health care providers in relation to the care for stroke patients as caregivers received Social support in this study was measured by using Multidimensional Scale of Perceived Social Support (MSPSS), developed by Zimet et al (1988)

CHAPTER II LITERATURE REVIEW

This chapter presents a literature review of the theoretical and empirical findings relevant to caregiver health status of patients with stroke Overview about stroke or cerebrovascular disease, stroke care in Vietnam, caregiver of patient stroke, health status of stroke caregiver, Stress-Appraisal Model, effects of caregiving on health status of stroke caregivers, and factors associated with health status of stroke caregivers was discussed in details as follows:

2.1 Stroke or cerebrovascular disease

2.1.1 Description of stroke 2.1.2 Prevalence and incidence of stroke 2.1.3 Risk factors of stroke

2.1.4 Impacts of stroke on stroke patients 2.2 Overview of Vietnam and stroke care in Vietnam

2.2.1 Description of Vietnam and Thai Nguyen 2.2.2 Health care system in Vietnam

2.2.3 Stroke care in Vietnam 2.3 Family caregivers of stroke patients

2.3.1 Definitions of family caregiver of stroke patients 2.3.2 Effects of caregiving on caregiver of stroke patients 2.4 Health status of stroke caregivers

2.4.1 Concepts of health status 2.4.2 Measurements of health status 2.4.3 Studies of health status of stroke caregivers 2.5 The theoretical framework

2.5.1 The selection of theoretical framework 2.5.2 Stress-Appraisal Model

2.5.3 Studies used Stress-Appraisal Model as a framework 2.6 Factors associated with health status of stroke caregivers

2.6.1 Characteristic of caregiver 2.6.2 Patient‟s functional status 2.6.3 Caregiver burden

2.6.4 Social support 2.6.5 Family conflict 2.7 Conclusion

2.1 Stroke or Cerebrovascular Disease

This section presents description of stroke, prevalence and incidence of stroke, risk factors of stroke, and impact of stroke on stroke patients

2.1.1 Description of stroke

Stroke is a term used to describe brain injury caused by an abnormality of the blood supply to a part of the brain Stroke is essentially a disease of the cerebral vasculature in which a failure to supply oxygen to brain cells Stroke (also called a cerebral vascular accident) is one of the leading causes of incapacitation It is caused

by decreased blood flow and subsequent inadequate oxygen supply to part of the brain leading to tissue damage, which caused neurological manifestations that can affect a number of body functions The effects of stroke lie on a continuum from rapid complete recovery to severe long term disability, or fatality, depending on the severity

of the stroke and the brain region affected Stroke is related to a number of other chronic conditions, such as cardiac disease, arteriosclerosis (ischemic vascular disease), hypertension (high blood pressure), and diabetes (Spence & Barnett, 2012) The consequences of stroke survivors who do long-term disability leading to the high amount of stresses and the burden that usually placed on caregivers who are required

to support the stroke survivors through the recovery process and rehabilitation

The World Health Organization (WHO) (2014) defines a stroke as “rapidly developing clinical signs of focal (at times global) disturbance of cerebral function, lasting more than 24 hours or leading to death with no apparent cause other than of vascular origin” A stroke should be distinguished from a Transient Ischemic Attack (TIA) which is defined as a transient episode (symptoms persist for < 24 hours) of

blood flow disturbance without resulting tissue death or long-term impairment (Gillen, 2015; Sacco et al., 2013) Stroke is broadly divided into two main categories: (i) Ischemic stroke (approximately 80% or more of stroke events) refers to blockages in arteries due to blood clots, a decrease of blood supply to the brain and (ii) Hemorrhagic stroke refers to bleeding inside the skull, either into the brain or into the fluid surrounding the brain (less than 20% of stroke events) (Gillen, 2015)

Signs and Symptoms of stroke

The signs of stroke depend on the brain region affected and can include the sudden onset of one or more of the following symptoms such as weakness or paralysis

of the face and limbs to either one or both sides of the body, difficulty speaking or understanding speech, dizziness or a loss of balance, severe and acute headaches or a notable change in the experience of headaches, blurry or decreased vision to one or both eyes chest pain and shortness of breath (Gillen, 2015)

After a stroke produces the initial damage to an area of the brain, surrounding brain tissue becomes edematous (swells) and inflamed, which leads to additional damage (Gillen, 2015) Although death of brain tissue causes permanent, areas of the brain that have experienced only swelling may recover, and function in these areas may be restored Consequently, individuals experiencing the stroke may not know the extent of their permanent functional limitations until weeks or even months after the initial event

After stroke, a variety of motor, sensory, cognitive, and communication functions may be affected (Spence & Barnett, 2012), either singularly or in combination In addition to the area of the brain damaged and the amount of damage that has occurred, the nature of functional manifestations experienced with stroke will, for the most part, be affected by whether the brain has been damaged on the left or right side Individuals who experience stroke on the left side of the brain will have manifestations that affect the right side of the body and that are consistent with functions controlled by the left side of the brain Likewise, individuals who experience stroke on the right side of the brain will have manifestations that affect the left side on the body and functions controlled by the right side of the brain

Not all individuals with stroke have the same functional manifestations The type and amount of function that are affected to depend on the location and extent

of the brain damage Individuals may experience any or a combination of the general functional difficulties discussed next as a result of stroke (Spence & Barnett, 2012)

2.1.2 Prevalence and incidence of stroke

Globally, an estimated 15 million new stroke cases annually in the world, with a total about 5 million people permanently disabled, 87 % occurred in low and middle-income countries like Vietnam (WHO, 2014) In the absence of any meaningful clinical or public health interventions, it is expected that this number will increase to an estimated 23 million first-ever strokes, with an associated 7.8 million deaths, by 2030 (WHO, 2014) Within developed countries, the incidence of stroke remains relatively high, with stroke mortality constituting a leading cause of death For instance, stroke remains the third-leading cause of death in the United States, with more than 140,000 people dying of stroke each year (Mozaffarian et al., 2015) In addition, in the United States, 795,000 individuals suffer a stroke annually, with 600,000 of these strokes representing first-time attacks (Mozaffarian et al., 2015) The overall incidence

of stroke in the United States remains at approximately 269 per 100,000 population (Mozaffarian et al., 2015) These rates mirror those in Europe, where annual stroke incidence ranges between 94.6 per 100,000 population for women and 141.3 per 100,000 populations for men (Nichols et al., 2013) A study of Vasiliadis and colleagues (2013) showed that the annual standardized incidence for stroke varied from approximately 141 to 373/100,000 populations per year (Vasiliadis et al., 2013) As the epidemiological transition of diseases extends through developing countries around the world, the gross number of global deaths attributable to stroke is expected to increase exponentially (Thrift et al., 2014) Already, beginning in the period spanning from 2000

to 2008, estimated stroke incidence in low- and middle-income countries surpassed incidence in high-income countries for the first time (Yan et al., 2016)

The public health burden of stroke is increasing internationally, particularly in nations with an ageing population and western lifestyles (Nichols et al., 2013) Stroke is the third most common cause of death worldwide, following heart disease and all forms of cancer (WHO, 2014) The likelihood of having a stroke increases with age and is higher among people aged 65 years and older compared to people below 65 years of age, and is more common in men than women (WHO, 2014)

Following a first in a lifetime stroke, it has been estimated that 20% of individuals will die within the first month, 33% will die within a year, while between 40% and 90% of those who survive will live with a permanent functional disability or handicap (Gillen, 2015), and become dependent on some type of informal caregiver to assist with functioning in daily life (Gillen, 2015) It is also estimated that the numbers of stroke and mortality will double by 2020 due to aging populations, the effects of smoking in developing countries (WHO, 2014) These statistics further indicate the increasing role that caregivers will continue to play in stroke recovery, on a global scale

According to Kim (2014), although stroke is a world-wide problem, the burden of stroke is particularly serious in Asia; its mortality is higher than in Europe

or North America The situation in Asia is dichotomized Stroke mortality and case fatality has been declining in northern-eastern countries such as Korea, Japan, Taiwan, and urbanized areas of China This is attributed to both the risk factor control and stroke care improvement In Asia, the annual data on the incidence of stroke is available in some countries, and the number varies between various studies and the studied population The overall incidence of stroke is between 116 and 483/100,000 per year The prevalence of stroke among each country depends on the age of studied population Among the major types of stroke, a higher proportion of ischemic stroke when compared to hemorrhagic stroke, is found in all countries (Suwanwela & Poungvarin, 2016) In Japan, the incidence of stroke is about 60.7 per 100,000 in 2010 (Iguchi et al., 2013), In China, there are 2.5 million new stroke cases each year and 7.5 million stroke survivors (Wu et al., 2013) In India, The estimated adjusted prevalence rate of stroke range, 84-262/100,000 in rural and 334-424/100,000 in urban areas (Pandian & Sudhan, 2013) In Pakistan, there is usually higher of stroke incidence rate

of 250/100,000, which is increasing to 350,000 new cases every year (Khan et al., 2015) In Thailand, the incidence of the stroke is about 330 cases per 100,000 in 2013 (Suwanwela, 2014)

In Vietnam, recently, stroke has become a serious health problem in people health which is the third leading cause of mortality after cardiovascular disease and cancer (Vietnamese Association of Neurology, 2015) Approximately 230,000 stroke cases annually accounting for 110,000 deaths and 1.7 disability-adjusted life years (DALYs) lost, and its estimated cost for the Vietnamese health system was US$

48 million per year (MOH, 2013) In addition, in the past few years, the number of patients hospitalized with stroke disease have increased from 1.7% - 2.5% For example, there were 1,210 patients admitted to the 115 hospital of People Ho Chi Minh with stroke in 2005, and this figure was increased to 7,923 patients in 2013 (Chuong et al., 2013) Of those, 90% will be living at home, and approximately, 80% will have a permanent disability (Fitzpatrick et al., 2012; Hoang et al., 2007) A cross-sectional survey by means of a questionnaire in 78 provincial hospitals in 64 provinces and cities of Viet Nam was targeted during 1 month (from 1/4/2008 to 1/5/2008) with results found that 4,120 stroke-patients (male: 58%; female: 42%, aged from 10 to 97, 62.4% older than 60) were assessed based on the medical records (Thinh et al., 2008) In study of Nguyen, (2008) surveyed 16,000 people in Minh Luong District, Kieng Giang and found that the prevalence of stroke was 411/100,000 This prevalence is higher than the prevalence of stroke in some urban areas in Vietnam For example, at the same time with above study, in Hue city (the central of Vietnam), the prevalence of stroke is 61.6/100,000; in Hanoi (the capital and in the North of Vietnam) is 105/100,000 and in

Ho Chi Minh City (the South of Vietnam) is 173/100,000 (Hoang, 2004)

2.1.3 Risk factors of stroke

Unfortunately, there are many risk factors for stroke incidence 1) Hypertension increases the risk of stroke in all age groups of men and women Reducing blood pressure in hypertensive patients has been shown to decrease the risk

of stroke significantly Screening for hypertension and aggressively treating hypertension should be the cornerstone of any primary prevention program for stroke (Gillen, 2015) 2) Cigarette smoking increases stroke risk by 40% in men and 60% in women and it seems to follow that smoking cessation leads to a reduction in stroke risk similar to the reduction in coronary heart disease incidence (Grotta et al., 2015) 3) Diabetes with blood sugar > 150 mg/mL is only a significant, independent contributor to stroke in order women and is greater for women than men at any age Prevention and control of the blood sugar and its components, particularly the frequently associated hypertension, are likely to reduce stroke incidence 4) Obesity persons have higher levels of blood pressure, blood glucose, and atherogenic serum lipids They would be expected to have an increased risk of stroke 5) Physical activity

may exert a beneficial influence on risk factors for atherosclerotic disease by reducing elevated blood pressure, inducing weight loss It has also been found to be directly associated with reduced stroke incidence (Gillen, 2015) 6) Diet: Consumption of grains, fruits, vegetables, and fish has been associated with decreased incidence of stroke in a number of studies (Grotta et al., 2015) 7) Alcohol: Heavy alcohol consumption is related to an increase in stroke and stroke deaths, and light to moderated alcohol consumption is associated with a reduced incidence of coronary heart disease (Grotta et al., 2015) Alcohol is clearly related to hemorrhagic stroke events, but the association with thromboembolic events is not definite Regardless, patients at risk for stroke should avoid heavy alcohol consumption In addition, there are several risk factors for stroke (Fitzpatrick et al., 2012; Nguyen, 2008; Spence & Barnett, 2012) These include older age, family history of stroke, fibrinogen, clotting factors, inflammation, and possibly psychological stress (Gillen, 2015) These factors can contribute to the condition of atherosclerosis discussed earlier (Fitzpatrick et al., 2012) Previous cases of a TIA or stroke are also risk factors for first time and recurrent stroke, respectively (Gillen, 2015) In terms of recurrent stroke, these risk factors tend to have the greatest influence soon after an initial stroke, especially within the first 7 days While the impact of risk factors decrease over time, authors of follow-

up studies still report an association between these risk factors and a recurrent stroke

up to 10 years following a first in a lifetime stroke (Gillen, 2015; Grotta et al., 2015; Spence & Barnett, 2012)

2.1.4 Impacts of stroke on stroke patients

The long-term influence of stroke on stroke survivors‟ health, related quality of life and well-being Stroke survivors‟ health-related quality of life is known to be significantly lower than that of controls with regard to physical functioning, general health and role limitations, and they are more likely to be dependent in basic activities of daily life (Koh, Barr, & George, 2014; Ren et al., 2014) The psychosocial and functional disabilities after stroke often have a chronic trajectory and cause severe disruptions to everyday life Cognitive impairment is frequent and two-thirds of stroke survivors do not recover from their cognitive impairment over the course of three years (Kitzmuller, 2012; Kuluski et al., 2014)

health-Stroke leads to permanent complication in both physical and mental health (Godwin et al., 2013; Hamza et al., 2014; Le, 2015), and its complications, including hemiplegia, poor balance, and visual difficulties, will undermine the stroke survivors‟ daily activities and deteriorate their quality of life It has been suggested that reduced quality of life after stroke seems to be related not only to physical disability but also to psychological and social factors (Ren et al., 2014)

Fatigue, depression and unemployment are associated with a poorer outcome in young stroke survivors‟ health-related quality of life (Godwin et al., 2013; Hamza et al., 2014) Overall, depression and anxiety are reported to have a negative impact on stroke survivors‟ well-being (Balhara et al., 2012; Le, 2015) In addition, a study by Thompson and Ryan (2009) dependency and breakdown of marital relationships are reported Insufficient information and unmet clinical needs in addition to loss of income or increased expenses have a negative influence on stroke survivors‟ quality of life (Andrew et al., 2015)

Multiple losses of cognitive and physical ability combined with changes in the personality lead to feelings of a profound loss of self and to social retraction (Kuluski et al., 2014) Disrupted embodiment and loss of self-confidence have a negative influence on gendered identity and complicate the establishment and maintenance of gendered relationships (Kitzmuller, 2012) In a study by Stone (2014), younger female stroke survivors experience being unable to meet other peoples‟ expectations Feeling that their invisible disabilities are neglected by others leads to withdrawal from social settings, which covers up their disabilities even more

In Vietnam studies, Hung and Pham (2010) conducted a study on the risk factors related to stroke in patients above 50 years old and found that problems of stroke patients were moderate and high level of disability Tuan and Hoang (2011) studied on 165 patients with hemisphere hemorrhage in Thai Nguyen National General Hospital and found that stroke patients have common symptoms such as headache (69%), hemiplegia (96%), urinary disorder (66.7%), nausea vomiting (52.3%), and language disorder (43.6%) In addition, Le (2015) investigated 89 stroke patients in Da Nang Hospital The results showed that these older adults had minor post stroke depression with a mean score was 12.79 (SD = 7.51) with a range of 0 - 33

In overall, stroke is the third leading cause of death and the most common

disabling disease with a profound emotional impact on both patients and their family members Annually, there are about 15 million new stroke cases in the world, with a total about 5 million people permanently disabled In Vietnam, approximately 230,000 stroke cases annually accounting for 110,000 deaths and 1.7 disability-adjusted life years (DALYs) lost The established risk factors for stroke include hypertension, cigarette smoking, obesity, elevated serum fibrinogen levels, and diabetes The long-term influence of stroke on stroke survivors‟ health, health-related quality of life and well-being Stroke survivors often experienced emotional and behavioral changes This is because stroke affects the brain, and our brain controls our behavior and emotions Injury from a stroke may make a person forgetful, careless, irritable or confused Stroke survivors may also feel anxiety, anger or depression

2.2 Overview of Vietnam and Stroke Care in Vietnam

This section presents the description overview of Vietnam and Thai Nguyen, health care system and policy of health, as well as stroke care in Vietnam

2.2.1 Description of Vietnam and Thai Nguyen

Vietnam is an S shape, lying in the Indochina peninsular, and borders with China, Laos, Cambodia, and the Gulf of Tonkin in the east With a surface area of more than 330.000 km2 and the distance from the northernmost point to the southernmost point of 1650 km (see Figure 2.1) Vietnam is a country with a diversified eco-system There are 57 provinces and 5 centrally controlled cities According to General Statistical Office Vietnam (GSO, 2013) the population was approximately 90.7 million in 2015, with 54 ethnic minority groups (GSO, 2013) The country is divided into six geographic-socioeconomic regions: Northern Midlands and mountain areas, Red River Delta, North Central area and Central coastal area, Central highlands, South East and Mekong River Delta Hanoi is the capital of Viet Nam, located in the Red River Delta Ho Chi Minh City is the largest city located between the South East and Mekong Delta regions

Vietnamese cultural values build on the principles of Confucianism Contrary to the Western idea of individualism, Vietnamese culture emphasizes the

importance of family and community, and its core values are harmony, duty, honor, respect, education and allegiance to the family (Pham, 2011) Family is the cornerstone of the Vietnamese society Vietnamese family follows the extended multi–generational pattern Vietnamese household includes the parents, the sons and their wives (in some instances, daughters and their husbands), grandchildren, and unmarried siblings In fact, the Vietnamese perceive society as a whole as one big extended family In a typical Vietnamese family household, the father is the central figure and is responsible for the well-being of every member of his family (Pham, 2011) The children paid more attention to their elderly parents, and had more knowledge about caring for their elderly parents (Le, 2015)

Figure 2.1 The map of Vietnam

Thai Nguyen is located in the North of Ha Noi capital, being the center of the highland and mountainous region in the North of Viet Nam, also the third largest educational center in the country and the regional health center with a system of quality disease examination and treatment facilities Thai Nguyen Province has a population of 1.3 million people, including eight ethnic groups, with 650 thousand

people of working age Thai Nguyen has a natural area of 3,541 km2 divided into 9 administrative units: Thai Nguyen City, Song Cong city, Pho Yen town, 6 districts and

180 communes and wards Thai Nguyen city has long been famous throughout Vietnam for the quality of its green tea, with Tan Cuong Commune producing the most widely recognized brand In addition, Thai Nguyen is also known as a center of education and training of scientists and technical staff of Northern midland and mountainous provinces It is the 3rd largest educational center with 21 universities, colleges and vocational training to educate tens of thousands of students Nowadays, Thai Nguyen is one of the cities in Vietnam that has several modern health services including: Thai Nguyen National General Hospital, 9 Provincial Hospitals, and 14 District Medical Centers (GSO, 2013)

2.2.2 Health care system in Vietnam

The current health system in Vietnam is a mixed public-private provider system The public system, the largest part, is organized under an administrative hierarchy, with the central level under the Ministry of Health and local levels under provincial and municipal authorities There are basically four levels of health administration: central, provincial, district, communal levels with the Ministry of Health at the central level The provincial hospitals provide technical assistance to the district hospitals, and district hospitals supervise commune health centers (see Figure 2.2) (Dao, Waters, & Le, 2008; Le et al., 2010) At each level, there were two-track systems One focuses on prevention, which includes the public health system and another focuses on mother and child health care; together they may be called the

“public health center” system The other is devoted to clinical acute care These two tracks are distinct and different systems, but they collaborate closely They are sometimes housed in the same hospital, and sometimes separately

The Ministry of Health manages a number of health institutions including national hospitals, research and Pasteur institutes, universities and colleges The most national general and specialty hospitals are concentrated in Hanoi and Ho Chi Minh City These are the highest referral hospitals of the provincial hospitals in each region and are also the teaching hospital for nearby medical universities The research institutes include Health Strategy and Policy Institute, Institute of Hygiene and Epidemiology,

National Institute of Nutrition, Institute of Occupational Medicine, and Pasteur Institutes

in Ho Chi Minh City and Nha Trang Research institutes offer postgraduate education and provide preventive services The health professional education institutions include several medical and pharmaceutical universities and medical colleges offering program

in medicine, nursing, midwifery, pharmacy and medical technology, among others Most of these institutions are directly managed by the Ministry of Health Most medical universities have been training hospitals with about 200 beds to implement training missions, scientific research and health-care provision (MOH, 2013)

Provincial health institutions include state-level departments of health, the medical services institutions such as general and specialized hospitals The provincial hospitals usually have a size of 500 beds The specialized hospitals include maternity, obstetric, pediatric, traditional medicine, and tuberculosis and lung disease hospitals The specialized hospitals are organized according to the population size of each province In the provinces with high population, some provincial regional hospitals are the referral level for neighboring district health centers Provinces often also have specialized in medical centers managed by the Department of Health in reproductive health, preventive medicine, HIV/AIDS prevention, forensics, eye disease, communication and health education, and food safety and population agencies These medical centers provide medical services as well as management of their specialty and have no inpatient beds Each of the provinces usually has a medical college or secondary medical school offering programs in medicine, nursing, midwifery, medical technology and pharmacy according to the province‟s needs (MOH, 2013)

Viet Nam has 419.542 employees working in the public health system The health workforce consists mainly of doctors, assistant doctors, nurses, midwives, medical technicians and traditional medicine practitioners These professions account for 83.55% of all health workers (GSO, 2014) Other cadres include pharmacists, engineers, accountants and technicians The density of doctors in Viet Nam was 7.34 per

10 000 people in 2012 and 7.61 per 10 000 in 2013 (MOH, 2015) The nurse-to-doctor ratio increased from 1.19 to 1 in 2008 to 1.34 to 1 in 2012 The number of employees in the health system has remained stable in recent years Highly qualified human resources such as PhD, master and specialists, work mainly at the national level including hospitals, research institutes and universities (GSO, 2013)

Vietnam‟s health system continues to make great progress in improving its capacities and performance However, despite the many significant achievements that have been made, Vietnam‟s health care system still faces many challenges These include an emerging double burden of non-communicable diseases and infectious diseases, an ageing population, etc (MOH, 2015) In addition, there are some specialty hospitals in the big city like Hanoi and Ho Chi Minh City, including those for oncology, cardiology, surgery, and pediatrics frequently overloaded patients Sometimes there was two, three, or four people in the same bed Overcrowding did not happen at the provincial, district, and commune levels To reduce hospital overcrowding, recently the government spent about 1 billion dollars building new hospitals and renovating existing ones in the provinces and districts so the overall number of beds has increased Moreover, Ministry of Health has implemented some other policies to reduce overcrowding at the central hospitals by the "core hospitals" introduced the satellite hospitals policy Under this policy, provincial hospitals were selected based on their human resources capacity, availability of medical equipment and devices, and infrastructure Health staff at these hospitals receive clinical skills training from their colleagues at core hospitals to help them perform their work at higher quality, thereby reducing the number of patients who bypass the provincial or district hospitals and go directly to the large core hospitals for care Similarly, Ministry of Health has provided additional training for family doctors to provide higher-quality basic services to the community, thereby preventing patients from going to hospitals for only basic services

Vietnam‟s national health insurance was established in 1992 to manage insurance throughout the country with two forms of insurance: compulsory and voluntary In 1999, 10.5 million people had health insurance, of which 6.9 million had compulsory insurance (66% of all insurers) and 3.6 million had voluntary insurance (34% of all insurers) (Dao, Waters, & Le, 2008; Le et al., 2010) In 2012, almost 61.8 million Vietnamese people or 68 % of the total population was covered by the health insurance 90% of them are covered by the compulsory insurance and 10% is covered

by the voluntary insurance The government wants to reach a coverage level of 80%

by 2020 and 100% by 2030 (Nguyen et al., 2012)

The number of health workers in Vietnam has increased substantially over the past 10 years, but there are still severe shortages in remote and disadvantaged areas Nguyen (2015) reported the most disadvantaged parts of the health workforce are those working in difficult mountainous and rural environments with limited resources coupled with little opportunity to practice to maintain and develop professional competencies and with poor supervision In addition, Hinh and Minh (2013) reported that generally low levels of work-related satisfaction among of primary health care staff, particularly regarding salary and incentives, equipment, and the working environment

Official management

Professional supervision

Figure 2.2 Structure of the Vietnamese health care system (Le et al., 2010)

2.2.3 Stroke care in Vietnam

Vietnam is a developing country and low and middle income countries in south-east Asia and like other Asian countries Vietnam is facing an enormous socio-economic burden caused by many people with chronic illness such as stroke The numbers of stroke victims hospitalized are steadily increasing Accounting for this phenomenon is the growing older population In addition, along with the economic and society growth that increasing middle class, who has a more inactive lifestyle and increased access to fatty food, but with relatively low public awareness of hypertension and smoking as stroke risked factors (Cong, 2007; Yamanashi et al., 2016)

Presently in Vietnam, although more than 20 Stroke Centers/Stroke Units have been taking care of stroke patients together with other specialized departments The Ministry of Health attempts to develop unified guidelines about Quality Standards Committee for hospital care of stroke These Quality Standards aim to establish quality of services for care to people with stroke by healthcare staff during the course of diagnosis and initial management, acute phase care, rehabilitation and management after acute phase throughout Vietnam (MOH, 2015) However, according to the Vietnam Association of Neurology (2015), stroke treatment and care in Vietnam necessitate further improvement due to hospitals' limited infrastructure and resources Although, the number of patients who died decreased, the number of people experiencing after-effects was on the rise About 90 per cent of patients have been after-effects, the severity of which depended on when the patients were hospitalized and how they were treated Most of the patients missed the

"golden hour" to go to the hospital, which is about three hours after experiencing stroke symptoms such as numbness in face, arms and legs, speaking difficulties and vertigo Moreover, hospitals still lack modern equipment for diagnosis and treatment The medical schools and universities lack a stroke faculty so most doctors gather their professional knowledge from their working experience In commune medical stations, where there are no doctors, giving emergency aid and treatment to stroke patients is also difficult

Besides the problem of inadequate equipment, the biggest problem facing stroke care in Vietnam, as in other developing countries, is that the number of stroke victims is excessive and continuously increasing Sickbed management becomes

problematic and the capacity to sense the stroke patients are limited As a result, stroke patients are generally discharged within one to two week of admission, and they mostly return to their homes where most caring for stroke patient‟s rehabilitation by family caregivers and little health care resources are available

Family members responsible for the care of chronically persons have been described in Vietnam literature (Hayashi, Hoang, & Nguyen, 2013; Ngo, Pornpat, & Wanne, 2011; Truong, 2015) In the Vietnamese culture, women are assumed to be the primary caregivers compared to other persons in the family Ngo and colleagues (2011) investigated a study related to burden among caregivers of patients with schizophrenia in Thai Nguyen, Vietnam The finding found that majority of caregivers were females (80%) and mothers had a prominent role in caregiving In a study of Truong (2015) about caregiving for dementia patients in Ha Noi, the researcher found that more daughters offered their care for parents that sons (62.5% and 37.7%) A smaller number of husbands were taking care of their wives, compared with wives taking care of their husbands (29.3% and 70.3%) (Truong, 2015) In addition, traditionally, children have to take care of their parents, and wises/husbands have to look after their spouses It fact, children show their love and feelings by looking after their parents when the parents are sick or unable to do things by themselves Children taking care of a parent who has had a stroke accept this task, because taking care of parents has been accepted in Vietnamese culture as one of the prime responsibilities of the children (Meyer et al., 2015; Pham, 2011)

Hayashi and colleagues (2013) conducted a study about needs of caregivers for stroke survivors in Da Nang They showed that the family caregivers mostly are women, including wives, daughters, and daughters-in-law The care provided includes activities of daily living, giving medication, and providing for other needs Most family members providing care scarcely knew how to care for the stroke patients They are depending on the hospital or the institution in which acute care was given (Hayashi, Hoang, & Nguyen, 2013) Interestingly, the evidence in Vietnam showed that lack of home care guideline for stroke caregivers, less attention in issues supporting, and educating for caregivers before the patient is discharged from hospitals that lead to caregivers frequently lack of knowledge and skills required to provide home care for stroke patients (Hayashi, Hoang, & Nguyen, 2013) In addition, in some health care

facilities in remote areas, family members may not receive any information about caregiving at home because of insufficiently knowledgeable health care professionals Under such circumstances, caregivers of the stroke patients have to find their own ways

to manage problems regarding the care they provide to their loved ones when they occur (Hayashi, Hoang, & Nguyen, 2013)

Overall, the number of cases of stroke is expected to increase in the near future because of the growing older population However, stroke treatment and care in Vietnam necessitate further improvement due to hospitals' limited infrastructure and resources As a result, stroke patients are generally discharged within one to two weeks of admission, and not surprisingly, the caregiving role is a big responsibility for family members of stroke survivors because most of them return to their homes

2.3 Family Caregivers of Stroke Patients

This section describes definition of family caregiver and effects of caregiving on caregiver of stroke patients

2.3.1 Definition of family caregiver

According to Larsen and Lubkin (2006), caregiver is someone who is responsible for attending to the daily needs of another person Caregivers are responsible for the physical, emotional and often financial support of another person who is unable to care for him/herself due to illness, injury or disability (Pearlin et al., 1990) The care recipient may be a family member, life partner or friends Caregivers are sometimes described as “informal”, a term professionals use to describe those who care for family members or friends in the home, typically without payment Whereas, formal caregiver refers to home health care providers and other professionals, are trained and paid for their services Some formal caregivers are trained volunteers associated with an agency (Alliance, 2006)

Family caregivers, informal caregivers or informal carer refers to a family member or a relative who provides help to a patient with stroke at home This person helps according to needs of the patient with limitations in activities of daily living, or needs for special care and treatment Caregiving may be provided consistently in a