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Families in Taiwan bear a heavy burden in caring for their elders. This paper presents a conceptualization of caregiver burden and data on the psychometric properties of the Caregiver Burden Scale. A convenient sample of 148 Taiwanese caregivers of elders with a stroke was recruited. Factor analysis showed three factors, awareness of degeneration o...
Context in source publication
Context 1
... on Lee and Wu (1998), the Cronbach alpha for internal consis- tency of the total scale was 0.91, subscales ranged from 0.75 to 0.93; the test-retest reliability for stability was not reported; the content validity of the CBS was supported through an extensive review of the literature and in-depth interviews with caregivers prior to item generation; and com- mon factor analytic procedures on the responses for construct validity resulted in a 4-factor solution: impact on physio-psychological aspects, impact on finances, impact on family relationships, and limitation of in- dividual time and freedom (Table 1). The four factors accounted for 60% of total variance, ranging from 12%-24%. ...
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A high percentage of individuals who have suffered a stroke will be cared for at home, primarily by aging spouses and/or relatives. Providing care to a family member with a chronic or life-threatening condition can be both emotionally rewarding and distressing for the care provider. The objective of this research was to test the factors associated...
An abundance of literature on caregivers of individuals with dementia has been written since the mid-1980s. However, most of this literature focused on the experience of stress, burden, and depression in caregivers, thus excluding the grief experience that also accompanies the caregiving experience. The purpose of this multimethod study is to descr...
The role of caregiver gender in caregiver burden and the association between the level of caregiver burden and institutionalization of elderly stroke survivors in Taiwan were explored using a correlational, descriptive design. The convenience sample was composed of 78 male and 69 female primary caregivers of stroke survivors. Simple multiple regres...
Citations
... Family caregivers experienced a lower feeling of embarrassment or anger and experienced lower perception of care receivers' dependency when they had better quality of family caregiverpatient relationship, therefore family caregivers experienced lower loss of control [11]. The quality of relationship between caregivers and care receivers could decrease the level of family caregiver burden [8,9] and the quality of relationship could be improved by communication skills [12] and filial obligation [13][14][15]. ...
... al Chinese philosophy, values, and beliefs affect a Chinese native's (Taiwan and China) views concerning their elderly family members and their caregiving support for them. However, since we are living in the 21st century, do the modern, native Chinese still provide the same caregiving support to their elder parents? And if not, how is it changing?Kao & Acton, 2006; Zhao & Kinfu, 2005). As population demographics changed, Taiwan also experienced rapid social and economic changes. Traditional familial household arrangements slowly changed, with the nuclear household (mother, father, and children— no grandparents) becoming more common (Tung, Chen, & Liu, 2006). This societal shift will increasingly a ...
Chinese philosophy has been a major cornerstone of Chinese culture for millennia and has bestowed on the world traditions such as Taoism, Yin and Yang, and filial piety. Although these beliefs have remained steadfast over thousands of years, their ability to survive unchanged in the future is uncertain. As the world forges ahead into the 21st century, several pertinent questions arise: Will age-old axioms, primarily those concerning elderly Chinese and their relationship with their children, survive? When ancient, traditional beliefs conflict with newer, Western ideas, which system of thought is likely to be the victor? Moreover, will elderly Chinese Americans and their perceptions concerning long-term care facilities cause problems with the traditional familial unit? This article will discuss these issues in detail.
... Although family care-giving has been the subject of study in Taiwan, most of these studies are conducted in the community (Tang, 2009;Weng, Ma, Zhang, & Zheng, 2002), on stroke patients (Kao & Acton, 2006) and persons receiving domiciliary palliative care (Tang;Tang & Li, 2008) rather than patients in the hospital setting. Few studies have examined family caregivers of hospitalized patients suffering from cancer (Department of Health in Taiwan, 2008); none of the studies to date examined the influences of this constellation of variables: psychological well-being, quality of the caregiver-patient relationship, and family support. ...
... Caregivers are exposed to different types of stress at various ages or developmental levels; for instance, an older caregiver might have more health issues. Stress is often the greatest at transition points where individuals or families move from one stage to the next, such as when families rebalance, refine and realign their relationships (Kao & Acton, 2006;Tang, 2009). For example, younger caregivers who worked noted a greater negative impact on their time (Kao & Acton; Tang), while in the current study, older caregivers experienced more negative impact on their health and psychological well-being. ...
... After having started taking care of the patient, the family caregivers' health was significantly worse than before. While this finding was similar to findings in previous studies in Taiwan (Kao & Acton, 2006) and in the U.S. (Nijboer et al., 2000), few of them have reported changes in the caregivers' health status before and after serving as a caregiver. ...
Purpose
The purpose of this study was to examine the influences of psychological well-being, quality of caregiver-patient relationship, and family support on the health of family caregivers for cancer patients in a Taiwanese hospital.
Methods
A cross-sectional, correlational design was used. A sample of 91 family caregivers of hospitalized cancer patients completed the Caregiver Reaction Assessment and Psychological Well-Being Scale. Pearson's product moment correlation and regression analyses were used to examine the data.
Results
The psychological well-being and the quality of the caregiver-patient relationship of family caregivers were found to be significantly positively correlated with caregivers' health. The lack of family support was found to be significantly negatively correlated with caregivers' health. Psychological well-being, quality of caregiver-patient relationship, and family support accounted for 59% of the variance in caregivers' health.
Conclusion
The findings suggest that nurses, while providing care in the hospital and upon discharge need to be aware of the psychological well-being, quality of caregiver-patient relationship, and family support of a family caregiver, as these factors all have an impact on a family caregiver' health.
... A multitude of instruments measure very specific concepts of caregiver burden such as worry, developmental burden, isolation, guilt, blame, powerlessness, sense of entrapment, scheduling concerns and strain. 21,33,[41][42][43][44][45][46] Many instruments have also been developed that measure the other side of caregiving, the satisfaction that occurs from being a caregiver. There are several instruments that provide subscales for both the positive aspects of caregiving satisfaction as well as the negative aspects of caregiving burden. ...
... An example of this is the "Caregiver Burden Scale". 42,43,57,58 Caregiver burden is a construct that is recognized internationally. However the term caregiver is not used synonymously throughout the world. ...
Objective:
The overall objective of this review is to quantitatively measure the psychometric properties and the feasibility of caregiver burden screening tools. The more specific objectives were to determine the reliability, validity as well as feasibility of tools that are used to screen for caregiver burden and strain.
Inclusion criteria:
This review considered international quantitative research papers that addressed the psychometric properties and feasibility of caregiver burden screening tools.
Search strategy:
The search strategy aimed to find both published and unpublished studies from 1980-2007 published only in the English language. An initial limited search of MEDLINE and CINAHL was undertaken followed by analysis of the text words contained in the title and abstract and the index terms used to describe the article. A second search identified keywords and index terms across major databases. Third, the reference list of identified reports and articles was searched for additional studies.
Methodological quality:
Each paper was assessed by two independent reviewers for methodological quality prior to inclusion in the review using an appropriate critical appraisal instrument from the Joanna Briggs Institutes' System for the Unified Management, Assessment and Review (SUMARI) package.
Limitations:
Because burden is a multidimensional construct defined internationally with a multitude of other terms, only those studies whose title, abstract or keywords contained the search terminology developed for this review were identified for retrieval.
Results:
The construct of caregiver burden is not standardized, and many terms are used to describe burden. A caregiver is also identified as a carer. Instruments exist in multiple languages and have been tested in multiple populations. A total of 112 papers, experimental and non-experimental in nature, were included in the review. The majority of papers were non-experimental studies that tested or used a caregiver burden screening tool. Because of the nature of these papers, a meta-analysis of the results was not possible. Instead a table is used to depict the 74 caregiver burden screening tools that meet the psychometric and feasibility standards of this review. The Zarit Burden Interview (ZBI), in particular the 22-item version, has been examined the most throughout the literature. In addition to its sound psychometric properties, the ZBI has been widely used across languages and cultures.
Implications for practice and research:
The significant amount of research that has already been done on psychometric testing of caregiver burden tools has provided a solid foundation for additional research. Although some tools have been well tested, many tools have published limited psychometric properties and feasibility data. The clinician needs to be aware of this and may need to team up with a researcher to obtain additional research data on their specific population before using a minimally tested caregiver burden screening tool. Because caregiver burden is multidimensional and many different terms are used to describe burden, both the clinician and researcher need to be precise in their selection of the appropriate tool for their work.
... Our findings offer an additional dimension of burden to broaden our understanding and measurement of the construct. Current instruments on burden are becoming routinely used in countries outside the United States (Kao & Acton, 2006;Miyashita et al., 2006;SerranoAguilar et al., 2006;Taub et al., 2004). Our findings suggest that researchers studying caregiving in Mexico should think about how burden is measured on existing instruments before adapting them for widespread use; the current conceptualizations and measurements of caregiver burden on these instruments may be problematic in non-U.S. ...
This study examined how women in a Mexico City suburb conceptualized the construct of burden within the context of giving care to older relatives. Data were collected on 41 women through semi-structured interviews regarding their caregiving experiences to elderly relatives. Phenomenological principles were used to analyze meanings and understandings of caregiving experiences. Burden was a multi-dimensional construct that referred to specific situations that made caregivers feel emotionally or physical "heavy." Burden also referred to "being a burden" by being in the way, making things difficult, or being a 'weight' on caregivers' shoulders. However, women in this study also viewed burden as a positive sacrifice that involved love, initiative, and good will. This study is an important first step in defining the ways in which caregiving is positively and negatively meaningful for Mexican caregivers and their families. Our findings offer an additional dimension of caregiver burden to broaden our understanding and measurement of the construct. The development of culturally appropriate instruments to measure caregiving burden in Mexico is necessary to provide an empirical foundation for policy recommendations that address the growing need for institutional support of caregivers. Moreover, our findings suggest that researchers studying caregiving in Mexico should think about how burden is measured on existing instruments before adapting them for widespread use.
Resumen
Objetivo
El propósito de este estudio fue identificar los factores determinantes que influyen en el proceso de adaptación y calidad de vida después de un ictus.
Métodos
Este estudio es un estudio observacional utilizando un diseño transversal. Se encuestaron pacientes 6 meses después de su alta tras un accidente cerebrovascular no hemorrágico y sus familiares cuidadores. La información sobre los encuestados se obtuvo de los datos de registros médicos en dos hospitales generales regionales en la provincia de Kalimantan Occidental, Indonesia. Se seleccionó un total de 80 pacientes mediante un método de muestreo consecutivo. Los modelos teóricos de los factores del paciente y del cuidador que influyen en las respuestas de adaptación y la calidad de vida posterior al accidente cerebrovascular se probaron mediante análisis de ruta.
Resultados
El afrontamiento, la autoeficacia y la aceptación de la enfermedad del cuidador tuvieron un efecto directo en la respuesta de adaptación psicosocial posterior al ictus en un 58,1%, siendo la autoeficacia la que más contribuyó (β = 0,668, p < 0,0001). La autoeficacia, la aceptación de la enfermedad y el comportamiento saludable tuvieron un efecto directo en la respuesta de adaptación fisiológica en un 24,3%, donde la autoeficacia también contribuyó en mayor medida (β = 0,272, p < 0,014). La adaptación psicosocial y la adaptación fisiológica tuvieron un efecto directo en la calidad de vida del 54,6%, donde la adaptación psicosocial presentó la mayor contribución (β = 0,63, p < 0,0001).
Conclusión
La autoeficacia contribuye más a las adaptaciones psicosociales y fisiológicas 6 meses después del accidente cerebrovascular. La adaptación psicosocial y la autoeficacia han demostrado ser los factores determinantes que más contribuyen a la calidad de vida de los pacientes 6 meses después del ictus.
Objective
The purpose of this study was to identify the determinant factors that influence the adaptation process and quality of life after a stroke.
Methods
This study is an observational study using a cross-sectional design. Respondents were patients who were 6 months post-discharge after non-hemorrhagic strokae and their family caregivers. Information about respondents was taken from medical record data at two regional general hospitals in West Kalimantan Province, Indonesia. A total of 80 patients were selected using a consecutive sampling method. Theoretical models of patient and caregiver factors that influence adaptation responses and post-stroke quality of life were tested using path analysis.
Result
Caregiver coping, self-efficacy, and illness acceptance had a direct effect on the post-stroke psychosocial adaptation response by 58.1%, with self-efficacy contributing the most (β = 0.668, p < 0.0001). Self-efficacy, illness acceptance, and healthy behavior had a direct effect on the physiological adaptation response by 24.3%, where self-efficacy also contributed the most (β = 0.272, p < 0.014). Psychosocial adaptation and physiological adaptation had a direct effect on the quality of life by 54.6%, where psychosocial adaptation showed the largest contribution (β = 0.63, p < 0.0001).
Conclusion
Self-efficacy contributes the most to both psychosocial and physiological adaptations 6 months after stroke. Psychosocial adaptation and self-efficacy have been proven to be the determinant factors that contribute the most to the quality of life of patients 6 months after stroke.
Objective:
The objective of this scoping review was to map and describe the available evidence reporting out-of-pocket expenses related to aging in place for older people with frailty and their caregivers.
Introduction:
As the global population ages, there has been increasing attention on supporting older people to live at home in the community as they experience health and functional changes. Older people with frailty often require a variety of supports and services to live in the community, yet the out-of-pockets costs associated with these resources are often not accounted for in health and social care literature.
Inclusion criteria:
Sources that reported on the financial expenses incurred by older people with frailty living in the community or their caregivers were eligible for inclusion in the review.
Methods:
We searched for published and unpublished (ie, policy papers, theses, and dissertations) studies written in English or French between 2001 and 2019 located in databases including MEDLINE (Ovid), CINAHL (EBSCO), and Elsevier. JBI scoping review methodology was used, and we consulted with a patient and family advisory group to support the relevance of the review.
Results:
A total of 42 sources were included in the review, including two policy papers and 40 research papers. The majority of the papers were from the US (n = 18), with others from Canada (n = 6), the United Kingdom (n = 3), Japan (n = 2), Australia (n = 1), Brazil (n = 1), China (n = 1), Denmark (n = 1), Israel (n = 1), Italy (n = 1), The Netherlands (n = 1), Poland (n = 1), Portugal (n = 1), Singapore (n = 1), South Korea (n = 1), Taiwan (n = 1), and Turkey (n = 1). The included research studies used various research designs, including cross-sectional (n = 18), qualitative (n = 15), randomized control trials (n = 2), longitudinal (n = 2), cost effectiveness (n = 1), quasi-experimental (n = 1), and mixed methods (n = 1).The included sources used the term "frailty" inconsistently and used various methods to demonstrate frailty. Categories of out-of-pocket expenses found in the literature included home care, medication, cleaning and laundry, food, transportation, medical equipment, respite, assistive devices, home modifications, and insurance. Five sources reported on out-of-pocket expenses associated with people who were frail and had dementia, and seven reported on the out-of-pocket expenses for caregivers of people with frailty. While seven articles reported on specific programs, there was very little consistency in how out-of-pocket expenses were used as outcome measures. Several studies used measures of combined out-of-pocket expenses, but there was no standard approach to reporting aggregate out-of-pocket expenses.
Conclusions:
Contextual factors are important to the experiences of out-of-pocket spending for older people with frailty. There is a need to develop a standardized approach to measuring out-of-pocket expenses in order to support further synthesis of the literature. We suggest a measure of out-of-pocket spending as a percentage of family income. The review supports education for health care providers to assess the out-of-pocket spending of community-dwelling older people with frailty and their caregivers, as well as to be aware of the local policies and resources to support older people with frailty address out-of-pocket spending.
Background:
Authors of previous research have not yet analyzed the role of potential moderators in the relationship between depressive symptoms and quality of life (QOL).
Aims:
The aim of this study was to examine the moderating effect of mutuality between depressive symptoms and QOL in stroke survivor and caregiver dyads.
Methods:
This study used a longitudinal design with 222 stroke survivor-caregiver dyads enrolled at survivor discharge from rehabilitation hospitals. Data collection was performed for 12 months. We examined survivor and caregiver QOL dimensions (physical, psychological, social, and environmental), depression, and mutuality at baseline and every 3 months. Hierarchical linear modeling was used to test 4 longitudinal dyadic moderation models (1 for each QOL domain).
Results:
Survivors (50% male) and caregivers (65% female) were 70.8 (SD, 11.9) and 52.5 (SD, 13.1) years old, respectively. We observed no significant moderating effects of mutuality for survivors across the 4 dimensions of QOL over time. However, higher survivor mutuality was significantly associated with higher survivor psychological and social QOL at baseline. Regarding caregivers, caregiver mutuality significantly moderated the association between caregiver depressive symptoms and caregiver physical (B = 0.63, P < .05), psychological (B = 0.63, P < .01), and social (B = 0.95, P < .001) QOL at baseline, but not in environmental QOL. Higher caregiver mutuality was significantly associated with less improvement in caregiver physical QOL over time.
Conclusions:
Mutuality is a positive variable on the association between depression and QOL for both members of the dyad at discharge but may lead to declines in physical health for caregivers over time. Further work is needed to understand the role of mutuality on long-term outcomes and associations with increased care strain.
