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Burden of care

The following resources examine the experience of caring as a burden.

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Resilience and burden in caregivers of older adults: moderating and mediating effects of perceived social support

BACKGROUND: The burden of caring for an older adult can be a form of stress and influence caregivers' daily lives and health. Previous studies have reported that resilience and social support play an important role in reducing physical and psychological burden in caregivers. Thus, the present study aimed to examine whether perceived social support served as a possible protective factor of burden among caregivers of older adults in Singapore using moderation and mediation effects' models. METHODS: We conducted a cross-sectional study with 285 caregivers providing care to older adults aged 60 years and above who were diagnosed with physical and/or mental illness in Singapore. The Connor-Davidson Resilience Scale (CD-RISC) was used to measure resilience and burden was measured by the Zarit Burden Interview (ZBI). The Multidimensional Scale of Perceived Social Support (MSPSS) was used to measure perceived social support. Hayes' PROCESS macro was used to test moderation and mediation effects of perceived social support in the relationship between resilience and burden after controlling for sociodemographic variables. Indirect effects were tested using bootstrapped confidence intervals (CI). RESULTS: The mean scores observed were CD-RISC: 70.8/100 (SD = 15.1), MSPSS: 62.2/84 (SD = 12.2), and ZBI: 23.2/88 (SD = 16.0) respectively. While perceived social support served as a full mediator between resilience and caregiver burden (β = - 0.14, 95% CI -0.224 to - 0.072, p < 0.05), it did not show a significant moderating effect. CONCLUSIONS: Perceived social support mediates the association between resilience and caregiver burden among caregivers of older adults in Singapore. It is crucial for healthcare professionals, particularly those who interact and deliver services to assist caregivers, to promote and identify supportive family and friends' network that may help to address caregiver burden.

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A comparison of psychometric properties of two common measures of caregiving burden: The family burden interview schedule (FBIS-24) and the Zarit caregiver burden interview (ZBI-22)

Purpose: The Family Burden Interview Schedule (FBIS-24) and the Zarit Caregiver Burden Interview (ZBI-22) are among the most widely used measures for assessing caregiving burden, but their psychometric performances have not been compared in the same study of caregivers of people living with schizophrenia (PLS). This is important because the measures assess overlapping constructs-the FBIS-24 assesses objective burden (e.g., completion of manual tasks) and the ZBI-22 assesses subjective burden (e.g., perceived distress, stigma). This study seeks to fill this gap by comparing the reliability and validity of the FBIS-24 and the ZBI-22 in a Chinese community sample of caregivers of PLS. Methods: A Cross-sectional stud was conducted in a community-based mental health service program in Central South part of China. A total of 327 primary family caregivers of PLS completed face-to-face interviews of the FBIS-24, the ZBI-22, the Patient Health Questionnaire (PHQ-9), the Generalized Anxiety Disorder Scale (GAD-7), and the Family Adaptation, Partnership, Growth, Affection and Resolve Index scale (APGAR), and PLS were assessed using the Global Assessment of Function scale (GAF). Results: Our findings show that both the FBIS-24 and ZBI-22 have comparable psychometric performance in terms of the internal consistency, convergent validity and known group's validity. Conclusion: Both the FBIS-24 and the ZBI-22 are psychometrically sound measures of caregiving burden but the choice of which measure to use will depend on the research question.

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A cross-sectional study on spouse and parent differences in caregiving experiences of people living with schizophrenia in rural China

Background Conflicting evidence exists on whether parent or spouse caregivers experience better outcomes when caring for family members with schizophrenia. The current study aims to examine relative caregiving experiences and impacts of spouse and parent caregivers for people living with schizophrenia (PLS) in China. Methods A cross-sectional study was conducted in a sample of 264 community-dwelling primary family caregivers of PLS. Face-to-face interviews were conducted to collect information on family caregiving activities; negative caregiving impacts including objective and subjective burden, and caregiver psychological distress such as depression and anxiety; positive caregiving impacts including caregiving rewarding feelings, and family functioning for spouse and parent caregivers. Results Both types of caregivers report engaging in similar caregiving activities and report comparable levels of objective burden. However, parent caregivers report significantly higher subjective burden than spouse caregivers (b=7.94, 95%CI:2.08, 13.80, P<0.01), which is also reflected in significantly higher depression (b=3.88, 95%CI:1.35, 6.41, P<0.01) and anxiety (b=2.53, 95%CI: 0.22, 4.84, P<0.05), and lower family functioning (b=-1.71, 95%CI: -2.73, -0.49, P<0.01). Despite these differences, both groups of caregivers report comparable rewarding feelings about caregiving. Conclusions Our findings have implications for family caregivers globally, but especially for countries that adhere to Confucian cultural values and provide guidance for future family intervention programs. Such programs may do well to incorporate cultural values and beliefs in understanding caregiving and kinship family dynamics so as to support family caregivers, and in particular, the specific vulnerabilities of parent caregivers.

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Insomnia and caregiver burden in chronic pain patients: A cross-sectional clinical study

Insomnia is a major comorbid symptom of chronic pain and is likely to affect caregiver burden. This cross-sectional study investigated the association between insomnia in chronic pain patients and family caregiver burden. Participants were 60 patients with chronic pain of >= 3 months duration. Demographic and clinical information were collected using the Athens Insomnia Scale (AIS), the Pain Disability Assessment Scale (PDAS), the Hospital Anxiety and Depression Scale (HADS), and a pain intensity numerical rating scale (NRS). Family members who accompanied chronic pain patients to hospital completed the Zarit Burden Interview (ZBI). Univariate regression analysis and multiple regression analysis were conducted to clarify the associations between ZBI scores and total/subscale AIS scores. Covariates were age; sex; pain duration; and scores on the PDAS, HADS anxiety subscale, HADS depression subscale, and NRS. Insomnia was independently associated with ZBI scores [beta: 0.27, 95% confidence interval (CI): 0.07-0.52, p = 0.001]. Scores on the AIS subscale of physical and mental functioning during the day were significantly associated with ZBI scores (beta: 0.32, 95% CI: 0.05-0.59, p = 0.007). In conclusion, the findings suggest that in chronic pain patients, comorbid insomnia and physical and mental daytime functioning is associated with family caregiver burden independently of pain duration, pain-related disability, and pain intensity.

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Sex and gender differences in caregiving burden experienced by family caregivers of persons with dementia: A systematic review

Objectives Much is known about the demands of caregiving for persons with dementia (PWD) and its effects on family caregivers, however sex and gender aspects have received less attention. We synthesized the evidence on sex and gender distinctions in: (1) the caregiving burden and (2) the impact of caregiving on the physical and mental health of family caregivers of PWD. Design Systematic review. Data sources Medline, Embase, PsycINFO and Cumulative Index to Nursing and Allied Health Literature between January 2007 and October 2019 were searched. Eligibility criteria for selecting studies Included studies met the following criteria: (1) examine experiences and/or impacts of caregiving among family caregivers of individuals with any form of dementia; (2) report sex and/ or gender distribution of study population and/or report results stratified by sex and/or gender, and (3) include both male and female family caregivers. Data extraction and synthesis Two independent reviewers extracted the data and assessed risk of bias using the Critical Appraisal Skills Program checklist and National Institutes of Health Quality Assessment Tool for Observational Cohort and Cross-sectional Studies. Data were synthesized using a narrative synthesis approach. Results A total of 22 studies were included. Caregiving burden was measured using various methods. A majority of studies reported higher burden among females. All studies that did not report a sex and gender difference in caregiving burden accounted for confounders. Findings on sex and gender differences on physical and mental health conditions were inconsistent with most studies failing to account for confounders in their analyses. Conclusions Current evidence on sex and gender differences in caregiving burden, mental and physical health is limited. Findings suggest presence of sex and gender differences in caregiving burden. Given the variety of mental and physical health constructs that were examined, further research is required to substantiate the evidence. 

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Can drawings help assessing dementia caregivers' burden? A preliminary study

The use of quantitative self-report methods for assessing the stress associated with dementia caregiving, especially among minority groups, has been lately criticized. The aim of this study was to examine whether Human Figures Drawings might provide a tool for assessing caregivers' burden. Sixty Israeli Arabs – 30 family caregivers of a person with dementia and 30 gender and age-matched non-caregivers – were asked to draw a caregiver of an elderly person with dementia and a caregiver of an elderly person with a physical disability. While no differences were found between the drawings of caregivers and non-caregivers, statistically significant differences were found between all the characteristics of the drawings depicting a caregiver of an elderly person with dementia and a caregiver of an elderly person with a physical disability, as drawn by caregivers. Several of the drawings' characteristics were significantly associated with caregiver burden. By introducing a nonverbal form of expression, Human Figures Drawings might add utility to the assessment of dementia caregivers' burden. 

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Spirituality alleviates the burden on family members caring for patients receiving palliative care exclusively

Background: Spirituality can give meaning to life, providing support and guidance in complex situations. Despite its importance in palliative care, the role of spirituality for family caregivers of patients under exclusive palliative care has not received enough attention in the literature. We aimed to address the correlation between spirituality and the emotional burden of family members of patients under exclusive palliative care. Methods: This transversal study was conducted in a tertiary private teaching hospital, in Saõ Paulo, Brazil. The study comprised family members of patients receiving palliative care exclusively. Only one caregiver who cared for the patient for at least 2 months was invited to participate. Family members answered the following questionnaires: WHOQOL spirituality, religiousness and personal beliefs (SRPB), Zarit Burden Interview (ZBI) and Self-Reporting Questionnaire (SRQ-20). They were excluded if patients were residing in a Long Stay Institution. Continuous variables were expressed by median and quartiles and analyzed with the Kruskal-Wallis test with Muller-Dunn post-test adjusted by Bonferroni or with the Mann-Whitney test for two groups. We used multivariable linear regression to identify independent predictors of caregiver burden. Results: A total of 178 family members were interviewed in a median of 8 [4-13.25] days after patient admission. Almost 40% of families presented high score of burden. Faith and Meaning in Life were the facets that scored the highest, with a median of 4.50 [4.00-5.00] for both facets. There was an inverse correlation between Zarit score and all of the WHOQOL-SRPB facets, indicating that the lower the spirituality, the greater the emotional burden. Inner peace was the strongest protective factor associated with burden. Conclusions: Psycho-socio-spiritual interaction can improve the coping ability of family caregivers of patients under exclusive palliative care, addressing a critical gap in the provision of holistic palliative care services. 

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Relational satisfaction of spousal/partner informal caregivers of people with multiple sclerosis: Relational commitment, caregiving burden, and prorelational behavioral tendencies

Background: Relational satisfaction of spousal/partner informal caregivers of people with multiple sclerosis (MS) is important for continued care and support. Previous studies have examined relational satisfaction in terms of well-being and quality of life of informal caregivers. Based on the Rusbult investment model, we directly studied the relational satisfaction of spousal/partner informal caregivers of individuals with MS. In doing so, we investigated possible effects that commitment to relationship, caregiving burden, and prorelational behavioral tendencies might have on relational satisfaction. Methods: Nine hundred nine adult spousal/partner informal caregivers of people with MS completed measures of relational satisfaction (Kansas Marital Satisfaction Scale), commitment to relationship (15-item commitment measure), caregiving burden (Zarit Burden Interview), and prorelational behavioral tendencies (adapted Prosocial Tendencies Measure). Participants also provided demographic information (age, sex, duration and type of relationship [spouse, partner]). Results: Structural equation modeling highlighted commitment to the relationship as the strongest predictor of relational satisfaction. Caregiving burden was found to affect relational satisfaction directly and through commitment to relationship. Prorelational behavioral tendencies were found to affect less relational satisfaction. Conclusions: Commitment to relationship, namely, intent to persist, had the highest positive effect on satisfaction. Caregiving burden was found to have a two-way negative relationship to commitment to relationship. These findings suggest that specialists should enhance the intent-to-persist aspect of commitment because it seems to have an alleviating effect regarding caregiving burden (which itself negatively affects relational satisfaction). 

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A causal model of caregiving burden among dementia caregivers

In this study, a cross-sectional, predictive correlation design was used to identify and test a causal relationship between behavior disturbances, coping, family conflict, self-esteem and social support to caregiver burden among dementia caregivers. A total of 450 caregivers of dementia aged over 18 years were recruited from 4 hospitals in northern Thailand based on selected criteria. Demographic Questionnaire, Behavioral Pathology in Alzheimer’s Disease Rating Scale (BEHAVE-AD, The Family Conflict Scale, The Zarit Burden Interview Scale, The Perceived Social Support Questionnaire, The Brief COPE and The Rosenberg Self-Esteem with acceptable reliability coefficients were used to collect data. Data were analyzed using descriptive statistics, Pearson’s Product-Moment Correlation and path analysis by structural equation modeling. Results showed that the modified model fitted with the data and explained 58 % of the variance in caregiving burden among dementia caregivers. Coping and family conflict had a positive direct effect on caregiving burden (p < 0.001), whereas self-esteem and social support had a direct negative effect on caregiving burden (p < 0.001). Behavior disturbance had a positive indirect effect caregiving burden (p < 0.001) via family conflict. Coping had a positive indirect effect on caregiving burden (p < 0.001) via behavior disturbance and family conflict. Social support had a negative indirect effect on caregiving burden (p < 0.001) via family conflict and self-esteem. The results of this study could be used as a guideline for psychiatric nurses in planning an appropriate intervention program to reduce burden of caregivers of dementia patients in Thailand. 

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Support, interventions and outcomes for families/carers of people with borderline personality disorder: A systematic review

It is clear from existent literature that families and carers of relatives and friends with borderline personality disorder (BPD) experience high levels of burden. Whilst family interventions are considered vital to improving the outcomes of those with a range of mental health difficulties, there has been limited development of direct interventions for carers of people with BPD, despite a high level of need. This systematic review aimed to appraise and synthesize the existing research evidence for interventions for carers of people with BPD. Ten studies were included that were directly related to six interventions for families and carers of people with personality disorder. The findings of these studies, whilst limited, do provide some initial evidence that interventions for carers may lead to significant outcomes for the participants, particularly in improving carer well-being and reducing carer burden. 

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Association between family caregiver burden and affiliate stigma in the families of people with dementia

Family caregivers of people with dementia (PWD) have a heavy care burden. Affiliate stigma is the stigma internalized by individuals associated with PWD. Limited research has addressed the affiliate stigma among caregivers of PWD and its influence on caregiver burden. Thus, our study investigated the burden of caregivers of PWD and its relationship with affiliate stigma. In addition, we examined the factors related to affiliate stigma. This cross-sectional study was conducted in a general hospital in Taiwan. We recruited 270 PWD and their family caregivers from the outpatient department. Relevant demographic and clinical assessment data of the patients and caregivers were evaluated. Regression analysis was performed to examine the factors associated with affiliate stigma. In total, 23.7% of the family caregivers had depression and 37.4% had anxiety. Male caregivers had higher levels of anxiety and heavier care burdens related to affiliate stigma compared with female caregivers. Moreover, characteristics such as younger age and low levels of dependence in daily activities among PWD were associated with increased affiliate stigma. A higher family caregiver burden was related to more severe affiliate stigma. Interventions for decreasing the family caregiver burden might reduce the effect of affiliate stigma. 

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Caregivers’ burdens and barriers in accessing healthcare services for dependent elders in Thailand

Background: Elders report poor health status and a greater need for healthcare services; however, in Thailand there are barriers in accessing healthcare services for these individuals. Objective: To study the health status of dependent elders in Thailand, the barriers in accessing health services for them, the impact resulting from these barriers, and the impact on caregivers when taking care of dependent elders. Materials and Methods: The study was conducted in 4 provinces in Thailand: Nonthaburi, Pathumthani, Ayutthaya, and Lopburi. Data were collected from 243 home-bound and bed-bound elders and 124 caregivers. The research tools both qualitative and quantitative parts were used to interview dependent elders and their primary caregivers. Results: The study found that 96.5% of the dependent elders had chronic disease comorbidity with non-communicable. The barriers in accessing health services included long waits for healthcare services, transportation expenses to these services, medical expenses, no mobility support or body assist tools, no accessibility to information, unawareness of their rights in terms of medical treatment, and caregiver issues. These barriers affected the dependent elders regarding their physical and mental health and financial issues. Moreover, taking care of dependent elders had the impact on caregivers in terms of physical and mental health, family relationships, social participation, and financial issues. Conclusion: There are still barriers in accessing health services for dependent elders. Furthermore, taking care of them is caregivers’ burden. Therefore, caregivers should be supported. 

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Identifying treatment effects of an informal caregiver education intervention to increase days in the community and decrease caregiver distress: a machine-learning secondary analysis of subgroup effects in the HI-FIVES randomized clinical trial

Background Informal caregivers report substantial burden and depressive symptoms which predict higher rates of patient institutionalization. While caregiver education interventions may reduce caregiver distress and decrease the use of long-term institutional care, evidence is mixed. Inconsistent findings across studies may be the result of reporting average treatment effects which do not account for how effects differ by participant characteristics. We apply a machine-learning approach to randomized clinical trial (RCT) data of the Helping Invested Family Members Improve Veteran's Experiences Study (HI-FIVES) intervention to explore how intervention effects vary by caregiver and patient characteristics. Methods We used model-based recursive partitioning models. Caregivers of community-residing older adult US veterans with functional or cognitive impairment at a single VA Medical Center site were randomized to receive HI-FIVES (n = 118) vs. usual care (n = 123). The outcomes included cumulative days not in the community and caregiver depressive symptoms assessed at 12 months post intervention. Potential moderating characteristics were: veteran age, caregiver age, caregiver ethnicity and race, relationship satisfaction, caregiver burden, perceived financial strain, caregiver depressive symptoms, and patient risk score. Results The effect of HI-FIVES on days not at home was moderated by caregiver burden (p < 0.001); treatment effects were higher for caregivers with a Zarit Burden Scale score <= 28. Caregivers with lower baseline Center for Epidemiologic Studies Depression Scale (CESD-10) scores (<= 8) had slightly lower CESD-10 scores at follow-up (p < 0.001). Conclusions Family caregiver education interventions may be less beneficial for highly burdened and distressed caregivers; these caregivers may require a more tailored approach that involves assessing caregiver needs and developing personalized approaches.

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Associations of knowledge of Alzheimer’s disease and memory loss and employment status with burden in African American and Caucasian family caregivers

Caring for an individual living with Alzheimer’s disease and other forms of dementia is especially challenging and impacts every aspect of the lives of the family caregivers. Family caregiving is defined as informal, unpaid care provided by family or friends to people with a chronic illness or disability. Caregiver burden, often experienced by a caregiver for a cognitively impaired family member, is multifaceted involving physical, psychological, social, and emotional problems. To date, little has been done to examine the relationship between the knowledge of Alzheimer’s disease and memory loss and caregiver burden. To fill this gap, a cross sectional, correlational design was employed to collect data from a convenience sample (N = 104) of African American and Caucasian dementia family caregivers. For this study, caregivers ranged from 25 to 89 years of age with African American caregivers possessing significantly lower levels of knowledge about Alzheimer’s disease and other dementias compared to Caucasian caregivers, p <.001. There were 44 caregivers who scored 41 or greater on the Caregiver Burden Inventory corresponding to moderate to severe and higher levels of burden. Results of hierarchical multiple regression models indicated that higher levels Alzheimer’s disease knowledge was significantly associated with lower caregiver burden for all caregivers, B = −0.294, p <.01. Additionally, employment status was significantly associated with caregiver burden. This study highlights the benefits of including disease specific knowledge within educational components of dementia related interventions and programs involving families.

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Behavioural disturbances in patients with frontotemporal lobe degeneration focusing on caregiver burden at home and in nursing homes

Aim and objective To explore the challenges faced by family caregivers of people with frontotemporal dementia and other forms of dementia affecting the frontal and temporal lobes causing behavioural disturbances through a qualitative approach with in‐depth interviews. Background Studies of different forms of dementia involving degeneration of the frontal and temporal lobes have mainly focused on the neurophysiology and physiology of the disease and on caregivers’ health. Few studies have described the challenges and burdens connected with everyday life and in relation to suitable nursing home placement that are faced by family caregivers. Method and design This study used a descriptive and explorative design. Eleven semi‐structured interviews with family caregivers of patients from special units in four nursing homes were conducted in 2014. Data were analysed based on Kvale and Brinkmann's three contexts of interpretation: self‐understanding, common sense and theoretical understanding. Checklist for qualitative studies: Standards for Reporting Qualitative Research (SRQR) http://www.equator-network.org/reporting-guidelines/srqr/ Results Two central themes were derived from the data: changes in behaviour and personality were perceived as incomprehensible, frightening and increasingly difficult to manage. Family caregivers experienced challenges in finding suitable care facilities when they were not able to continue providing home care. Due to behavioural disturbances and lack of relevant competencies among health personnel, family members were often moved between nursing homes. Conclusion Pronounced personality and behavioural disturbances such as tactlessness and aggression in a family member with dementia are experienced by caregivers as stressful and burdensome and may lead to feelings of shame and guilt. A lack of suitable care facilities adds to the stress and difficulties of the families and entails an additional and unresolved burden. Relevance to Clinical Practice The study reveals a need for more knowledge among those organising health services as well as healthcare professional dealing with this patient category to ease the burden on next of kin.

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Action Research as a Method to Find Solutions for the Burden of Caregiving at Hospital Discharge

The role played by family caregivers in delivering long-term care is crucial: they enhance the quality of care perceived by the patients and support the shift to out-of-hospital care. However, taking care of a relative entails a huge burden that usually begins with the patient’s hospital discharge and may mean that caregivers become patients in need of care as well. Owing to socio-demographic trends, informal caregiving is the most important source of care in community settings; hence targeting the caregivers’ burden properly is crucial. This study explores how action research (AR) can be used to develop new hospital practices to manage the burden borne by family caregivers when patients are discharged from hospital. The 7-month-long action research reported in this paper consisted of three stages (burden identification, burden sharing, and burden management) and it was conducted in a teaching hospital in Rome (Italy). Both quantitative (surveys) and qualitative (focus groups and simulation sessions) techniques were used to engage participants. The AR demonstrates that there is a feasible way in which hospital managers can address proactively the caregivers’ needs in the hospital discharge process, to the advantage of the patients and the entire community.

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The mediational role of burden and perceived stress in subjective memory complaints in informal cancer caregivers

The role of informal caregiver of cancer patients is considered a situation of chronic stress that could have impact on cognitive functioning. Our aim was to evaluate differences in perceived stress, subjective memory complaints, self-esteem, and resilience between caregivers and non-caregivers, as well as the possible mediational role of burden in caregivers. The sample was composed of 60 participants divided into two groups: (1) Primary informal caregivers of a relative with cancer (CCG) (n = 34); and (2) non-caregiver control subjects (Non-CG) (n = 26). All participants were evaluated through a battery of tests: Socio-demographic questionnaire, subjective memory complaints questionnaire (MFE-30), Rosenberg Self-Esteem Scale, resilience (CD-RISC-10), and perceived stress scale (PSS). The CCG group also completed the Zarit burden interview. Results indicated that CCG displayed higher scores than Non-CG in MFE-30 (p = 0.000) and PSS (p = 0.005). In the CCG group, Pearson correlations indicated that PSS showed a negative relationship with resilience (p = 0.000) and self-esteem (p = 0.002) and positive correlation with caregiver’s burden (p = 0.015). In conclusion, CCG displayed higher number of subjective memory complaints and higher perceived stress than Non-CG, whereas no significant differences were obtained on self-esteem and resilience. These results could aid in designing new intervention strategies aimed to diminish stress, burden, or cognitive effects in informal caregivers of cancer patients. 

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Development of a mobile app for family members of Veterans with PTSD: identifying needs and modifiable factors associated with burden, depression, and anxiety

Family members of Veterans with posttraumatic stress disorder (PTSD) face high levels of burden that are poorly addressed by existing mental health services. Widely distributed mobile interventions could play a role in addressing these unmet needs. The purpose of this study was to characterize caregiver burden in those seeking a mobile app for self-management of stress symptoms and to develop a model to guide mobile interventions for family members. Those living with a Veteran with PTSD (n = 212) and interested in using a mobile intervention agreed to participate. The majority reported moderate-to-severe levels of depression (60%) and/or caregiver burden (59%). Relationship quality, communication, and self-efficacy for caregiving were the strongest predictors of negative outcomes (p’s <.001), and qualitative results identified several additional unmet needs (e.g. relationship concerns, safety concerns). This study identifies potential mechanisms by which a mobile app could improve family functioning in the context of PTSD.

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The Burden of Mental Illness and Mental Distress on Family Members

BACKGROUND: The Organisation for Economic Cooperation and Development reports that one in every two people experiences a mental illness in their lifetime, and developed policy guidelines to address the impact of mental health-related issues on employment and health. The results of this policy initiative have been reported in many member countries but no survey findings are available yet for Japan. Previous studies in Japan focused on the social costs of mental illness, but little empirical evidence exists on burdens created by mental illness in individual households. AIMS: This study investigated the effects of mental illness and mental distress on family members' employment and sleep time. Employed men and women family members and unemployed women family members who wanted to work were included in the study. METHODS: Japanese survey data from the 2013 Comprehensive Survey of Living Conditions were analyzed to identify the above-mentioned effects. A propensity score matching method was used to create a valid comparison group for family members of patients with mental illness and distress. RESULTS: For depression, family member average weekly work hours decreased by a range of 1.06 (p%lt;0.01) to 1.18 (p<0.01) for men, and 0.53 (p<0.1) to 1.06 (p<0.05) for women. For dementia (termed "major neurocognitive disorder" in the DSM-5), there were no statistically significant effects on work hours in men, but the work hours of employed women increased, ranging from 1.15 (p<0.05) to 1.25 (p<0.01). Mental illness in a family member also significantly influenced future employment prospects of unemployed women. In family members of patients with dementia, sleep time decreased by a range of 3.6 minutes (p<0.05) to 4.8 minutes (p<0.01) per night for men and 12 minutes (p<0.01) per night for women. DISCUSSION AND LIMITATIONS: These findings can add to the existing evidence on the effects of mental illness and distress on family members' work hours and sleep time in Japan, which are consistent with research from other countries such as Germany, the UK, and the US. This study has two limitations. First, the magnitude of the effect of mental illness is limited with respect to the illness category in our study, since the severity of the condition and the impact on actual daily life may vary across categories or differ even within the same category. Second, measurement error might exist in the self-reported mental illness measures. POLICY IMPLICATIONS: First, cooperation and mutual support between employers and the community are necessary to support working family caregivers by allowing them to adjust work schedules to accommodate caregiving responsibilities. Second, social institutional policies are needed that reduce the burden of informal caregiving for family members with mental illness and increase access to long-term care for those in need. Third, since mental illness and distress have been shown to affect family members' sleep schedules, health care programs must focus on promoting caregivers' general health. IMPLICATIONS FOR FUTURE RESEARCH: To further address the burden of mental illness and distress on family members, future research should examine illness severity as measured by Activities of Daily Living.

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“I was Confused About How to Take Care of Mom Because this Disease is Different Everyday”: Vietnamese American Caregivers’ Understanding of Alzheimer’s Disease

Family members provide the majority of caregiving to individuals living with Alzheimer’s disease (AD) and related dementias. Asian American families are disproportionately impacted by the burden of caregiving due to limited knowledge about the disease in this community. This study explored how Vietnamese American caregivers understand AD and provide care to family members with AD. Twenty caregivers who have provided care to a family member with AD participated in a semi-structured qualitative interview. Data were analyzed using thematic analysis. Several themes were identified in the caregivers’ understanding of AD: (a) “Now I know:” the disruptions, shocks and surprises leading up to the initial diagnosis; (b) The frustrations of managing family members’ cognitive impairments; (c)“Going with the flow:” challenges in managing personality and behavioral changes; (d) The exhaustion of around-the-clock caregiving; (e)“Taking it day by day” in the face of progressively worsening symptoms. Underlining the participants’ descriptions of AD was a shared understanding of the progressively worsening, complex and unpredictable nature of the disease that makes it challenging for family caregivers on a daily basis. Findings provide important implications for healthcare workers’ outreach to Vietnamese American families to ease the caregiving experience through culturally-responsive education, thereby enhancing the families’ ability to recognize the early symptoms and seek appropriate help.

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The influence of swallowing impairments as an independent risk factor for burden among caregivers of aging parents: A cross-sectional study

Informal caregivers can experience high levels of burden, negatively impacting both the caregiver and care recipient. The presence of dysphagia (swallowing impairments) in care recipients is suggested to contribute to increased caregiver burden. The purpose of this study was to describe the type and severity of caregiver burden experienced by adults caring for community-dwelling older parents reporting symptoms of dysphagia. Using surveys from the National Health and Aging Trends Study and the National Study of Caregiving, data from 895 adults providing care for an aging parent were analyzed. Binary logistic regression analyses revealed that swallowing difficulties reported by a parent is a significant independent predictor of increased physical and emotional burden in their caregivers. Forty percent or more of these caregivers reported moderate to severe physical and/or emotional burden. Suggestions are provided to identify dysphagia early on and to provide supports for caregivers.

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The Lived Experiences of Family Caregivers of Persons Dying in Home Hospice: Support, Advocacy, and Information Urgently Needed

Death in America is changing from hospital to home, which demands complex skills by family caregivers. However, information from family members about the challenges of providing home hospice care until death is scant. To understand the challenges a family caregiver confronts when he/she decides to deliver hospice care and during the actual delivery of the hospice care, we used descriptive phenomenology methods to document the experience of 18 family caregivers as they delivered home hospice care. We learned the decision to begin home hospice was made by a physician, followed frequently by family resistance and refusal to assist. Family caregiver burden is enormous, compounded by fatigue, sleeplessness, and confusion on issues such as morphine dosage and administration. The stages and process of dying, such as transition, baffled family caregivers. All family caregivers agree financial and emotion support, empathic advocacy, and affirmation of their worth are needed to sustain them to care for the dying. The peacefulness following offering a home death comes at a high price to family caregivers. Evidence is needed from a randomized controlled trial as to effectiveness of advocacy support for family caregivers to increase their resiliency and higher probability of a good death for the dying.

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Unmet needs of family caregivers of hospitalized older adults preparing for discharge home

Objectives: To describe unmet needs of caregivers of hospitalized older adults during the transition from hospital back home, and identify subgroups with different needs. Methods: Patients and family caregivers were recruited from an acute care hospital in Montreal, Canada. Measures included Instrumental Activities of Daily Living (IADL), Hospital Anxiety and Depression Scale (HADS), Zarit burden scale, and Family Inventory of Needs. Dimensions of unmet needs were explored with principal component analysis; regression tree models were used to identify subgroups with different unmet needs. Results: A total of 146 patient-caregiver dyads were recruited. Three categories of caregiver unmet needs were identified: patient medical information; role clarity and support; and reassurance. Caregiver subgroups with highest unmet needs were those with high burden of care plus depressive symptoms (n = 46) and those caring for patients with low IADL scores (n = 10). Discussion: Caregivers with high burden and depression are those with the greatest unmet needs during the care transition.

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The social and economic burden on family caregivers for older adults in the Czech Republic

Background: In this paper, we analyse the economic burden of elder care in the Czech Republic by assessing how family members of senior citizens engage in caregiving. To do this, we examined the time and cost associated with caregiving as a function of age, gender, and income of the caregiver. Methods: A questionnaire comprising 17 items was used to gather data from 155 informal caregivers whose seniors are affiliated with 200 registered home care agencies. Spearman rank correlation was adopted to analyse how caregivers' income, age and gender influences the costs accrued and time spent in caring for elders. The expenses are divided into direct and indirect. Publicly available sources are used to establish expenses on treatment and medication, which cannot be determined by the questionnaire survey. Results: Results show that around-the-clock care is the most common. Spouses of care recipients make up the highest number of caregivers, and women represent the largest portion of this group. Additionally, the more the time spent caring for an elder, the higher the cost associated with such care. The total annual burden of informal caregivers is determined by the sum of annual average indirect costs, amounting to € 36,888, and annual direct costs, amounting to € 2775, resulting in a total of € 39,663 per year. Conclusion: Czech social policymakers should begin to consider better packages for caregivers in the form of incentives and other monetary benefits to improve living standards and care for ageing seniors. 

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Caregiver Burden in Multiple Sclerosis: Recent Trends and Future Directions

Purpose of Review: In spite of recent advances in treatment, many people with multiple sclerosis (MS) require ongoing care and support. Informal caregivers can experience burden as a result of their role, with possible implications for quality of life (QOL). We review recent research examining MS caregiver experience to (1) understand current risk factors for caregiver burden and (2) identify possible strategies for increasing carer well-being. Recent Findings: MS caregiver experience is highly variable and can be predicted by a variety of care recipient, caregiver and contextual factors. Burden is not the only characteristic associated with care, with positive consequences also reported. Emerging research suggests a number of ways in which carers can be better supported. Summary: Identifying and meeting the needs of MS caregivers offers the best way of delivering tailored support. Future research should focus on the development of psychosocial supports, while acknowledging the needs of those caring for different MS patient populations.

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Cost-Effectiveness and Effects of a Home-Based Exercise Intervention for Female Caregivers of Relatives with Dementia: Study Protocol for a Randomized Controlled Trial

Previous research has proposed a range of support interventions to mitigate the adverse impact of caregiving on the daily life of caregivers of relatives with dementia. However, the effectiveness of these interventions shows a high variability. Informal caregivers usually lack the time and/or live too far from conventional facilities to do physical exercise, especially those who live in rural areas. Thus, home-based interventions may be more efficacious due to their greater convenience for this population. The present work proposes and describes a study protocol for a randomized control trial that will analyze the efficacy and cost-effectiveness of a home-based, structured individual physical exercise intervention to improve the health-related quality of life and the mental health of female informal caregivers of relatives with dementia. The nine-month-long intervention will comprise participation in two supervised physical exercise sessions per week at the caregiver's home. The proposed study outcomes will be: (1) feasibility of and adherence to the home-based provision of the intervention; (2) improvement in physical fitness and quality of life; and (3) reduction in subjective burden, psychological symptomatology and depression. Analyses will also be performed to determine the cost-effectiveness after the intervention. In conclusion, this intervention might thus represent a tailored and feasible strategy to help caregivers cope with the physical and psychological stress resulting from caregiving-related responsibilities, and it could represent a novel cost-effective support home-based intervention for caregivers.

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Women with high level of education, victims of the care of people with Alzheimer's

The aim of this job is to know the existing relationship between the task of caring patients with Alzheimer's disease, caregivers' gender and their level of academic studies. Descriptive study, 69 persons diagnosed with Alzheimer's disease and their respective familiar caregivers as subjects of the study. Age, gender, academic level, burden, depression, anxiety level, quality of life and social loneliness have been measured in caregivers. Age, gender, dependency level and neuropsychological state have been measured in patients. Data collection was done in 2016. Logistic regression analysis was performed. Caregivers with high levels of academic studies suffer more burden, being women in their majority. They are more likely to present social loneliness and higher levels of anxiety and a worse quality of life than men. The burden may be due to a greater number of responsibilities to respond to, and to the inability to combine it with the role of caregiver. We can conclude that women become victims of caring Alzheimer' patients. 

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Factors related to the burden of family caregivers of elderly patients with spinal Tumours in Northwest China

Background Family caregivers of elderly patients with spinal tumours experience considerable pain and burden during the care process. This study aims to investigate the factors associated with caregiver burden in family caregivers of elderly patients with spinal tumours. Methods A total of 220 elderly patients with spinal tumours (age >= 65 years) hospitalized at the spine centre of our hospital from January 2015 to December 2017 and their family caregivers were recruited for this cross-sectional study. All participants completed a sociodemographic questionnaire. Caregiver burden, social support and self-efficacy were assessed by the Chinese version of the Zarit Burden Interview (ZBI), the Social Support Rating Scale (SSRS) and the General Self-Efficacy Scale (GSE), respectively. The factors related to caregiver burden were analysed by multivariate analysis. P < 0.05 was considered statistically significant. Results The 216 elderly patients with spinal tumours were 71.59 +/- 8.49 years old, and their caregivers were 70.46 +/- 9.13 years old. A total of 170 patients were cared for by their spouses, who accounted for 78.7% of all caregivers. The ZBI score for the family caregivers was 35.5 +/- 7.5, and most caregivers (84.5%) reported a moderate or heavy burden. The factors related to caregiver burden included patient paralysis, the primary cancer site, chemotherapy and/or radiation, cognitive dysfunction, functional status, monthly income, pain score, caregivers' SSRS score, and GSE score. Conclusions Most family caregivers of elderly patients with spinal tumours have a considerable caregiver burden. Interventions based on social support and self-efficacy can help reduce caregiver burden.

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Caregiving burden and sleep quality amongst family caregivers of Chinese male patients with advanced cancer: A cross-sectional study

Purpose: To examine the level of caregiving burden and sleep quality as well as their interrelationship amongst family caregivers of Chinese male patients with advanced cancer. Method: A cross-sectional study was conducted in Hong Kong. The Caregiver Reaction Assessment (CRA) and the Pittsburgh Sleep Quality Index (PSQI) were used to measure caregiving burden and sleep quality of the family caregivers. Results: A total of 96 family caregivers were recruited. Disrupted schedule (3.8; SD = 0.8) was rated as the most affected consequence of caregiving burden. Around 78.1% of the caregivers suffered from sleep problems. Hierarchical multiple regression revealed that health problems due to caregiving burden was independently associated with poor sleep quality after controlling for socio-demographic characteristics of both patients and caregivers (regression coefficient, B = 2.09, P = 0.012). Conclusions: Caregiving burden amongst family caregivers of male patients with advanced cancer was remarkably high and associated with poor sleep quality. Strategies aiming to alleviate caregiving burden of caregivers may help break this vicious cycle to enhance the sleep quality of caregivers. Results also underscore the need to assess and develop intervention to relieve caregiving burden for family caregivers of cancer patients. 

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Comparing perspectives of family caregivers and healthcare professionals regarding caregiver burden in dementia care: results of a mixed methods study in a rural setting

BACKGROUND: Persons with dementia (PwD) need support to remain in their own homes as long as possible. Family caregivers, homecare nurses and general practitioners (GPs) play an important role in providing this support, particularly in rural settings. Assessing caregiver burden is important to prevent adverse health effects among this population. This study analysed perceived burden and needs of family caregivers of PwD in rural areas from the perspectives of healthcare professionals and family caregivers. METHODS: This was a sequential explanatory mixed methods study that used both questionnaires and semi-structured interviews. Questionnaires measuring caregiver burden, quality of life and nursing needs were distributed to the caregivers; health professionals received questionnaires with adjusted items for each group. Additionally, in-depth qualitative interviews were carried out with eight family caregivers. RESULTS: The cross-sectional survey population included GPs (n = 50), homecare nurses (n = 140) and family caregivers (n = 113). Healthcare professionals similarly assessed the psychosocial burden and stress caused by behavioural disturbances as most relevant. Psychological stress, social burden and disruptive behaviour (in that order) were regarded as the most important factors from the caregivers' perspective. It was found that 31% of caregivers reported permanent or frequent caregiver overload. Eight themes related to caregiver burden emerged from the subsequent interviews with caregivers. CONCLUSIONS: Professional support at home on an hourly basis was found to be highly relevant to prevent social isolation and compensate for lack of leisure among caregivers of PwD. Improvement of interprofessional dementia-related education is needed to ensure high-quality primary care. 

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“Caregiving is a full‐time job” impacting stroke caregivers' health and well‐being: A qualitative meta‐synthesis

Family caregivers contribute to the sustainability of healthcare systems. Stroke is a leading cause of adult disability and many people with stroke rely on caregiver support to return home and remain in the community. Research has demonstrated the importance of caregivers, but suggests that caregiving can have adverse consequences. Despite the body of qualitative stroke literature, there is little clarity about how to incorporate these findings into clinical practice. This review aimed to characterise stroke caregivers' experiences and the impact of these experiences on their health and well‐being. We conducted a qualitative meta‐synthesis. Four electronic databases were searched to identify original qualitative research examining stroke caregivers' experiences. In total, 4,481 citations were found, with 39 studies remaining after removing duplicates and applying inclusion and exclusions criteria. Articles were appraised for quality using the Critical Appraisal Skills Programme (CASP), coded using NVivo software, and analysed through thematic synthesis. One overarching theme, ‘caregiving is a full‐time job’ was identified, encompassing four sub‐themes: (a) restructured life, (b) altered relationships, (c) physical challenges, and (d) psychosocial challenges. Community and institution‐based clinicians should be aware of the physical and psychosocial consequences of caregiving and provide appropriate supports, such as education and respite, to optimise caregiver health and well‐being. Future research may build upon this study to identify caregivers in most need of support and the types of support needed across a broad range of health conditions.

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Caregivers of Patients With Brain Metastases: A Description of Caregiving Responsibilities and Psychosocial Well-being

BACKGROUND: There are increasing numbers of cancer patients with brain metastases, and there is a high potential for caregiving burden. Little work has explored caregiving responsibilities and psychosocial well-being in informal family caregivers (FCGs) of cancer patients with brain metastases. This study aimed to address this gap in the literature. METHODS: Data were drawn from baseline pilot study data. Caregivers completed demographic information and provided a self-report of their caring responsibilities and psychosocial well-being via questionnaire. RESULTS: Participants were 21 FCGs of patients with brain metastases. Many caregivers are devoting extensive time to providing care; there was high variability in the number and types of caregiving activities reported. Although many caregivers report feeling well supported, other aspects of psychosocial well-being were less robust, including anxiety, depression, burden, and coping self-efficacy. CONCLUSION: Although FCGs reported mitigating factors such as social support, they still experience significant distress. Findings support previous work suggesting that neuro-oncology caregiving is burdensome, with adverse effects on health and well-being. Foundational work, such as this, will set the stage to identify areas for future intervention.

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Caregiver strain on informal caregivers when providing care for older patients undergoing major abdominal surgery: A longitudinal prospective cohort study

Background: Health-care systems nowadays rely on complementary patient care by informal caregivers. The need for, and burden on, informal caregivers will likely increase in the upcoming years. This study aimed to examine the burden on caregivers when providing care for elderly patients undergoing major abdominal surgery. Methods: A single-centre longitudinal cohort study was conducted between November 2015 and June 2018 in the Amphia hospital in Breda, the Netherlands. Patients aged 70+ undergoing elective surgery for colorectal carcinoma (CRC) or an abdominal aortic aneurysm (AAA) were included in this study. Informal caregiver burden was assessed and compared over time using the Caregiver Strain Index (CSI) at the outpatient clinic visit, at discharge, 2 weeks post-discharge and after 6 and 12 months. The effects of patient- and caregiver-related factors on the experienced caregiver strain were examined. Results: CSI scores of 248 caregivers were significantly increased at discharge (3.5 vs 2.6; p < 0.001) and 2 weeks post-discharge (3.3 vs 2.6; p < 0.001). After 12 months, scores dropped below baseline scores (1.8 vs 2.6; p = 0.012). The highest strain was observed 2 weeks post-discharge for AAA patients and at discharge for CRC patients. Older age, physical or cognitive impairment and burden of comorbidity were associated with an increased caregiver strain at baseline. Type of surgery was independently associated with the change in mean CSI scores over time; a bigger change in caregiver burden is observed after open surgery. Conclusion: In the early postoperative period, perceived caregiver strain was significantly increased. Psychological support for caregivers may be advisable, with timing of this support depending on diagnosis and patient-related factors. Trial registration: This manuscript was retrospectively registered on 05-04-2016 in the Netherlands Trial Register (NTR5932). http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=5932. 

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Relationship Between Caregiver Burden and Family Functioning in Family Caregivers of Older Adults With Heart Failure

Caregivers of individuals with heart failure are at high risk for diminished quality of life because of the energy involved in providing necessary care. Caring for someone with chronic heart failure can affect caregivers' physical, psychological, and social health, collectively referred to as the burden of care, and may also affect family functioning. The current cross-sectional study aimed to investigate the relationship between caregiver burden and family functioning in caregivers of older adults with heart failure in southeastern Iran using the Zarit Burden Inventory and the Family Assessment Device based on the McMaster Model of Family Functioning. The Pearson correlation coefficient, independent t test, and analysis of variance were used to determine relationships among variables. Results showed a significant correlation between burden of care and total score of family functioning. Therefore, it is necessary to take measures to reduce burden of care for caregivers through education and support programs and to improve their family functioning and quality of life. 

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Association between exercise training in haemodialysis patients and burden of their family caregivers: A cross-sectional study

Aim: Considering that exercise programmes are related with a range of benefits for end-stage renal disease patients, we evaluated the association between haemodialysis (HD) patients’ involvement in intradialytic exercise training with the burden of their family caregivers. Methods: In this cross-sectional study, 60 caregivers of HD patients were recruited, 30 of them who cared for patients that regularly participated in an exercise programme during dialysis sessions and 30 caregivers who looked after patients undergoing usual HD treatment without intradialytic exercise. The caregivers were submitted to the Caregiver Burden Scale (CBS) and their quality of life (short-form-36 (SF-36)), anxiety and depression levels were assessed. Data were expressed as mean ± SD or median (interquartile range). Results: Multiple linear regression showed that the global CBS score was significantly associated with the exercise training after adjusting for age, educational level and anxiety level of caregivers, and dependency level of patients measured by the Lawton scale (coefficient of determination = 0.53; adjusted coefficient of determination = 0.48). Additionally, the caregivers of HD patients submitted to intradialytic exercise (42.0 ± 12.9 years, 33.3% male) compared to caregivers of patients undergoing usual treatment (50.7 ± 17.5 years, 26.7% male) exhibited less caregiver burden (global CBS score = 1.2 (0.2) vs 1.9 (0.7), P < 0.001), better quality of life (physical component score = 53.7 (9.6) vs 49.7 (16.2) and mental component score = 50.6 (17.5) vs 28.2 (32.5), P < 0.05) and lower anxiety (7.2 ± 4.2 vs 10.8 ± 4.1, P = 0.001) and depression levels (3.0 (3.3) vs 6.0 (5.3), P = 0.034), respectively. Conclusions: Intradialytic exercise training in HD patients was associated with lower burden of their family caregivers. 

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Effectiveness of a psychoeducational intervention for caregivers of People With Dementia with regard to burden, anxiety and depression: A systematic review

Aim To assess the effectiveness of psychoeducational interventions with respect to burden, anxiety and depression in family caregivers of People With Dementia living at home. Background In dementia, the family assumes the role of main caregiver, maintaining the patient in a good state of health. Nevertheless, burden, anxiety and depression may have negative repercussions in caregivers. Therefore, professional supports through psychoeducational programmes are recommended as interventions for improving caregivers' health. Design A quantitative systematic review. Data Sources Electronic searches were performed in CINAHL/AMED/CENTRAL/Web of Science/LILACS/PUBMED from January 2005–August 2018. Review Methods The review was conducted using the JADAD scale to assess bias risk and the quality of the randomized controlled trials (RCTs) and the CONSORT instrument to assess study quality report. The extracted data were reviewed by independent reviewer pairs. The review was reported using PRISMA. Results A total of 18 RCTs met inclusion criteria. Seven were classified as Technology‐based Interventions and 11 as Group‐based Interventions. Conclusion Psychoeducational interventions for caregivers allow them to increase their knowledge of the illness, develop problem‐solving skills and facilitate social support. Technology‐based Interventions significantly affect burden while Group‐based Interventions affect anxiety, depression, insomnia and burden and quality of life and self‐efficacy. Impact Research findings can be used to classify caregivers in future interventions according to illness stage to obtain more precise results.

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Palliative care needs in Parkinson's disease: focus on anticipatory grief in family carers

Background: A diagnosis of Parkinson's disease (PD) has a significant psychological impact on both the person diagnosed and their loved ones, and can have a negative effect on family relationships. Caring for someone with a long-term progressing illness may cause anticipatory grief, i.e., experienced before a bereavement. This has been widely studied in illnesses such as dementia and cancer, but less so in relation to PD. The study aims were: (I) to demonstrate the occurrence of anticipatory grief experienced by carers of people with PD; (II) to explore how this grief relates to caregiver burden and caregiver depression and demographic variables. Methods: Family carers of people with moderate to advanced PD (Hoehn & Yahr stages 3-5) were invited to complete a survey, including demographic questions and three questionnaires: Zarit Burden Interview (ZBI); 16-item Geriatric Depression Scale (GDS); and Anticipatory Grief Scale (AGS). Results: Anticipatory grief was common among carers of people with PD [mean AGS score =70.41; standard deviation (SD) =16.93; sample range, 38-102]. Though distinct concepts, carers with higher burden and depression scores also experienced more anticipatory grief symptoms. Carers experiencing higher anticipatory grief tended to be caring for someone of a younger age, displaying more non-motor symptoms, at a more advanced disease stage, and who considered either themselves and/or their loved one as depressed. Conclusions: Carers of people with advanced PD experienced anticipatory grief, as well as depression and a high caregiver burden. To improve carer outcomes, our focus should include the period both before and after the death of a loved one, and carers should receive regular psychological assessment and support.

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Potential for Digital Monitoring to Enhance Wellbeing at Home for People with Mild Dementia and Their Family Carers

Digital technologies have the potential to assist people with dementia to monitor day to day activities and mitigate the risks of living independently. This purposive pilot study surveyed participants for frailty, wellbeing, and perceived carer burden using the 3Rings(TM) digital plug. 30 paired participants used the digital device for four months. People with dementia reported a decline in wellbeing and increased frailty. Family carers reported a decline in wellbeing but 18 reported a reduction in burden. The use of digital monitoring by family carers demonstrated a reduction in their perceived burden and the device was acceptable to people with mild dementia living alone.

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Psychological Burden of Hepatic Encephalopathy on Patients and Caregivers

OBJECTIVES: Hepatic encephalopathy (HE) is common in advanced cirrhosis and is characterized by marked neuropsychiatric abnormalities. However, despite its severity and effects on brain function, the impact of HE on psychological status of patients has not been adequately assessed. The aim of this study was to evaluate the effect of HE on psychological status of patients and their informal caregivers. METHODS: Fifteen patients with cirrhosis and episodic or persistent HE and their corresponding informal caregivers were included. Semistructured interviews were performed in patients and caregivers. Quality of life (QoL) was assessed by the short-form 36 in both patients and caregivers, and the Zarit burden score was measured in caregivers. The analysis of interviews was performed using qualitative methodology. RESULTS: HE causes a major psychological impact on patients with HE. The first episode of HE caused a very significant impact that was reported with deep feelings, mainly of fear, anger, misery, anxiety, and sorrow, which persisted with time. Symptoms causing more psychological impact on patients were impaired ability to walk and speak. All effects were associated with a marked impairment in QoL. The psychological impact was also marked in caregivers who had a major burden, as assessed by the Zarit score. Moreover, QoL, particularly the mental component score, was markedly impaired in caregivers in intensity similar to that of patients. DISCUSSION: HE has a profound psychological impact on patients and their informal caregivers, associated with a marked negative influence on QoL. The psychological effects of HE on patients and caregivers should be evaluated and treated.

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Caregiver Issues and Concerns Following TBI: A Review of the Literature and Future Directions

Survival following traumatic brain injury (TBI) has increased following advances in medical care. However, TBI survivors often experience significant deficits in cognitive function, psychological disturbance, and residual physical deficits. The caregivers for these survivors, who are often family members, may have limited capacity to provide the services and care that are required. Limitations in capacity may be attributable to poor preparation, increased burden, lack of appropriate resources, and lack of required support. Likewise, there are resultant consequences for the caregiver and the survivor. The purpose of this paper is to review issues associated with caregiver capacity including preparation, burden, burnout, and consequences. In the latter portion of the paper, assessment of caregiver readiness and understanding and intervention is described (as well as current limitations). The final portions of the paper describe future directions, the call for increased research, and medicolegal implications.

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Caregiving and bereavement in palliative care: A cross-cultural study between Brazil and Portugal

Caregiving and bereavement outcomes are strongly influenced by socio-cultural context. Past research has found higher levels of caregiver burden and psychological morbidity in Portuguese compared to Brazilian caregivers. This study compared Brazilian and Portuguese family caregivers in palliative care to identify differences in psychological morbidity and caregiver burden and their relationship with psychosocial factors such as sociodemographic variables, circumstances of end-of-life care and dying, social support, family functioning, and perception of quality of care. Prospective data were collected from convenience samples of family caregivers in Brazil (T0 n = 60; T1 n = 35) and Portugal (T0 n = 75; T1 n = 29) at two separate time points—during caregiving (T0), and during the first two months of bereavement (T1). The study samples consisted mostly of women, offspring, and spouses. In both countries, family caregivers devoted most of their day to taking care of their sick relatives and reported a lack of practical support. Portuguese caregivers had higher levels of burden than Brazilian caregivers, and in both populations a greater burden was associated with more psychopathological symptoms. Higher caregiver burden among Portuguese caregivers was associated with the circumstances of death and the perceived lack of emotional support. Among Portuguese caregivers, symptomatology persisted during bereavement, reaching significantly higher levels of anxiety, somatization, and peritraumatic symptoms compared to the Brazilian sample. These results show differences between family caregiver samples in Portugal and Brazil during the bereavement process. Understanding the underlying cultural patterns and mechanisms requires future research.

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Care and the shadow of the fourth age: how does home care get caught up in it and how does it stay away from it?

This article examines how care encounters at the elders' homes are forged, and how the way these encounters are forged avoids or evokes the social imaginary of the fourth age. Data were gathered in Portugal from elders receiving home care (16 cases), their care workers (eight cases) and family carers (six cases), through participant observation and informal conversations (conducted at the elders' homes), as well as focus groups. The collected data were analysed according to the procedures of Framework Analysis. This study found five forms of care encounters - marked by conflict, infantilisation, burden, harmony and indifference - the harmony form being the only one found to maintain the fourth age at a distance. It concludes that home care has a Janus-like nature in relation to the fourth age, and that the way home care encounters are forged depends on the conditions of the care settings and the actions of all participants in care encounters. It also concludes that it is difficult to maintain the social imaginary of the fourth age at a distance when the elders exhibit high levels of infirmity. Finally, it concludes that family carers play a crucial role in the way care encounters unfold. Implications for practice and policy include vocational training regarding the relational component of care, and information and educational programmes for family carers.

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Caregiving centenarians: Cross-national comparison in Caregiver-Burden between the United States and Japan

Background and Objectives: The personal distress associated with caring for a family member has been well documented; however, questions about the burden of caregiving for centenarians and cross-national differences in the caregiving context, remain unanswered. Research Design and Methods: This study includes reports by caregivers of 538 near-centenarians and centenarians in the U.S. and Japan: 234 from the Georgia Centenarian Study and 304 from the Tokyo Centenarian Study. Basic descriptive and multivariate regression analyses were conducted. Mean levels of caregiver burden and near-centenarian and centenarians’ characteristics (as predictors) for caregiver burden were compared between the U.S. and Japan. The near-centenarian and centenarians’ functional capacity and personality were assessed as predictors. Results: Differential predictive patterns in caregiver burden were found in the two groups. In the U.S., near-centenarian and centenarians’ agreeableness and conscientiousness were negatively associated with caregiver burden; whereas the near-centenarian and centenarians’ neuroticism and number of diseases were positively associated with caregiver burden. In Japan, the near-centenarian and centenarians’ activities of daily living, openness, and agreeableness were negatively associated with caregiving burden. Interaction effects between functional capacity and personality, on caregiver burden were observed only in the U.S. In the U.S., higher levels of agreeableness and openness significantly changed the level of caregiver burden associated with vision problems and a greater number of diseases. Discussion and Implications: Cross-national comparative predictors of caregiving burden between the two countries emphasized that caring for centenarians should be understood in the caregiving context, as well as the social context.

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Sources of Management Burden and Solutions among Primary Family Caregivers of the Alzheimer's Disease Patient: a Qualitative Study

Background: Alzheimer's disease is commonly seen in older people in China,in particular,its prevalence reaches 5.14% in those aged over 65 years,bringing huge management burden to primary family caregivers of the patient. It has received extensive attention worldwide. Objective: To investigate the sources of management burden and major solutions among primary family caregivers of the Alzheimer's disease patient, providing a basis for further development of the family management system for such patients. Methods: By use of purposive sampling,the primary family caregivers of 12 re-examined outpatients with Alzheimer's disease were recruited from Hangzhou Seventh People's Hospital and Zhejiang Provincial Hospital of TCM from September to December 2018 were recruited,and were interviewed intensively using a phenomenological approach. Colaizzi's seven-step analysis was performed to analyze the interview results. Results: Five subthemes of management burden sources of the primary family caregivers for the Alzheimer's disease patient were summarized as follows: lack of sufficient care knowledge to cope with the patient's complex conditions, social burden, emotional burden, physical burden and unappreciated care. For the solutions to the management burden, two themes of caregiver self-management strategies and patient family management strategies with six subthemes such as rational acceptance and active accommodation and so on arose. Conclusion: Medical professionals and others need to provide effective emotional support and adequate care knowledge for primary family caregivers for the Alzheimer's disease patient to help them form effective family management strategies. At the same time, the diversified long-term care system should be improved to reduce the burden of care.

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The effectiveness of a nurse‐led intervention to support family caregivers in end‐of‐life care: Study protocol for a cluster randomized controlled trial

Aim To evaluate the feasibility of a structured nurse‐led supportive intervention and its effects on family caregivers in end‐of‐life care at home.Background Family caregivers are crucial in end‐of‐life care. They may experience burden due to the responsibilities associated with caregiving. Some family caregivers feel insufficiently prepared for their caregiver role. Nurses have a unique position to provide supportive interventions at home to reduce caregivers’ burden and improve preparedness. However, few nurse‐led interventions are available to support family caregivers in end‐of‐life care at home. Design We will perform a cluster randomized controlled trial. The clusters consist of twelve home care services, randomly assigned to the intervention group or the control group. Methods The study population consists of family caregivers of patients in the last phase of life. In the intervention group, nurses will systematically assess the supportive needs of family caregivers, using an assessment tool and the method of clinical reasoning. Family members of the control group receive care as usual. Primary outcome is burden measured by the Self‐Rated Burden Scale. Secondary outcomes are preparedness for caregiving, caregiving reactions and acute (hospital) admissions of the patient. In addition, the feasibility of the intervention will be evaluated. The study was funded in October 2016 and was ethically approved in April 2019. Impact Findings from this study will contribute to the scientific and practical knowledge of nursing interventions to support family caregivers in end‐of‐life care. Trial registration The Netherlands Trial Register (NL7702)

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Direct and indirect predictors of burden among Bedouin caregivers of family members with terminal cancer in Israel

Objective: The diverse demands of cancer care, which require time, psychological, physical, and material resources, often lead to caregiver burden. Studies with caregivers from ethnic minority groups suggest that they have unique beliefs and may experience different perceptions of role demands and caregiving. The aim of this study was to identify direct and indirect predictors of burden among Bedouin caregivers of family members with terminal cancer in Israel. Methods: A total of 101 Bedouin family caregivers of terminal cancer patients participated in this study. Participants were recruited from the oncology department of the largest medical center in southern Israel. The questionnaire battery included the Arabic version of the Zarit Burden Interview and other reliable measures validated for cancer caregiving. We performed path analyses on data allowing us to identify hypothesized, and un-hypothesized predictors of burden in this understudied population. Results: Most caregivers were adult children, followed by spouses, siblings and other family members. In our model, caregiver burden was directly predicted by depressive symptoms and (absence of) social support. Burden was indirectly predicted by quality of life (via depressive symptoms), optimism (via social support), emotional exhaustion (via quality of life and depressive symptoms) and mortality communication (via emotional exhaustion, quality of life and depressive symptoms). Conclusion: Social support and depression are the most important factors among all studied measures. Culturally-tailored intervention programs are required to foster community care and mitigate burden for Bedouin and other ethnic minority groups in Israel. 

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The unique burden of rare cancer caregiving: caregivers of patients with Erdheim-Chester disease

Research examining the experience of informal caregivers (ICs) for patients with rare cancers is limited. This was a mixed-methods pilot study of 14 ICs for patients with Erdheim-Chester disease (ECD), an ultra-rare neoplasm. Participants were predominantly female and over half provided at least 60% of their loved one's care. Participants completed measures of the impact of caregiving, caregiver burden, unmet needs, quality of life, anxiety, and depression. Participants reported substantial impact of caregiving, including limiting (50%) or discontinuing (21%) paid employment, and exhausting financial savings (43%). ICs reported a moderate level of burden with five (38%) reporting risk for burnout. While participants reported anxiety (64%) and depression (14%), their overall quality of life was favorable. Semi-structured interviews highlighted factors related to the distress and isolation of navigating a rare cancer. ECD ICs report burden and distress shaped by the experience of providing care for a patient with a rare cancer.

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Emotion regulation therapy for cancer caregivers-an open trial of a mechanism-targeted approach to addressing caregiver distress

Informal caregivers (ICs) are integral to care provided to patients facing life-threatening or incurable illnesses. This responsibility causes considerable burden, as approximately one half of ICs report clinically significant symptoms of depression and/or anxiety that persist when left untreated. Psychosocial interventions containing efficacious treatment principles (e.g., cognitive behavior therapy [CBT]) show disappointing results in reducing anxiety and depression in ICs. This may reflect failure of these interventions to specifically target crucial mechanisms underlying the central feature of distress caused by the patient's illness-notably, perseverative negative thinking (PNT). Emotion Regulation Therapy (ERT) is an efficacious CBT developed to explicitly target mechanisms underlying PNT and the emotional concomitants that arise in response to stressful situations. This open trial was conducted to evaluate the acceptability and initial efficacy of ERT adapted to the experience of cancer ICs (ERT-C). Thirty-one ICs provided informed consent and completed eight weekly individual sessions of ERT-C. Participants completed self-report measures of depression and anxiety symptoms, PNT, emotion regulation deficits, and caregiver burden before and after treatment. ERT-C was well tolerated as indicated by 22 treatment completers and feedback provided in exit interviews. ICs demonstrated reduced depression and anxiety symptoms, PNT, and emotion regulation deficits with moderate to large effect sizes (Hedge's g range: 0.36-0.92). Notably, caregiver burden was not reduced but ICs expressed more ability to confront caregiving-related challenges. Findings offer promising but preliminary support for ERT-C as a conceptual model and treatment modality for distressed cancer ICs. 

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Burden of care in caregivers of patients with alcohol use disorder and schizophrenia and its association with anxiety, depression and quality of life

Background Caregivers play a pivotal role in providing care for mentally ill patients. Increase in caregiver burden can make them vulnerable to mental illness themselves.Aims We assessed the severity of burden of care and its association with depression, anxiety and quality of life among caregivers of patients with alcohol use disorder (AUD) and schizophrenia. Methods This was an observational, cross-sectional, single-centred study of 50 consecutive caregivers of patients with AUD and schizophrenia. Participants were recruited from the psychiatry outpatient department of a tertiary care hospital between January and June 2017. The caregivers were further assessed by demographic details, Hospital Anxiety Depression Scale for assessment of depression and anxiety, Zarit Burden Interview for assessment of caregiver burden and WHO Quality Of Life-BREF for assessment of quality of life. Statistical data were analysed using GraphPad InStat V.3.06 (California). Multiple linear regression analysis was applied to identify the predictors of caregiver burden. Results Burden of care experienced by caregivers of patients with AUD is as high as that of caregivers of patients with schizophrenia (U=1142.5, p=0.46). Caregivers experiencing high burden of care are likely to have symptoms of anxiety (U=22, p&lt;0.001), depression (U=32, p&lt;0.001) and poor quality of life (U=84.5, p&lt;0.001). Female caregivers are likely to experience higher burden of care (U=819.5, p=0.006). For caregivers of patients with schizophrenia, anxiety, environmental health, socioeconomic status and patients’ occupation can predict burden of care, while for caregivers of patients with AUD, depression and environmental health can predict burden of care. Conclusion Our study suggests that caregivers of patients with AUD experience burden of care as high as that of caregivers of patients with schizophrenia. Caregivers with high burden of care are more likely to have depression, anxiety and poor quality of life. Trial registration number CTRI/2017/03/008224.

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Prediction of caregiver burden in amyotrophic lateral sclerosis: a machine learning approach using random forests applied to a cohort study

Objectives Amyotrophic lateral sclerosis (ALS) is a rare neurodegenerative disease that is characterised by the rapid degeneration of upper and lower motor neurons and has a fatal trajectory 3-4 years from symptom onset. Due to the nature of the condition patients with ALS require the assistance of informal caregivers whose task is demanding and can lead to high feelings of burden. This study aims to predict caregiver burden and identify related features using machine learning techniques. Design This included demographic and socioeconomic information, quality of life, anxiety and depression questionnaires, for patients and carers, resource use of patients and clinical information. The method used for prediction was the Random forest algorithm. Setting and participants This study investigates a cohort of 90 patients and their primary caregiver at three different time-points. The patients were attending the National ALS/Motor Neuron Disease Multidisciplinary Clinic at Beaumont Hospital, Dublin. Results The caregiver's quality of life and psychological distress were the most predictive features of burden (0.92 sensitivity and 0.78 specificity). The most predictive features for Clinical Decision Support model were associated with the weekly caregiving duties of the primary caregiver as well as their age and health and also the patient's physical functioning and age of onset. However, this model had a lower sensitivity and specificity score (0.84 and 0.72, respectively). The ability of patients without gastrostomy to cut food and handle utensils was also highly predictive of burden in this study. Generally, our models are better in predicting the high-risk category, and we suggest that information related to the caregiver's quality of life and psychological distress is required. Conclusion This work demonstrates a proof of concept of an informatics solution to identifying caregivers at risk of burden that could be incorporated into future care pathways.

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Predictors of the burden on family carers of patients on haemodialysis in Jordan

Background: Family caregivers of patients on haemodialysis can experience life changes and depression. Aims: This study assessed the self-perceived burden on their family caregivers of haemodialysis patients in Jordan, and the caregivers' perceived burden of caregiving and depression. The predictors of caregiver outcomes were determined. Methods: This cross-sectional study included 190 patients on haemodialysis and their caregivers in Jordan. Patients' self-perceived burden on their caregivers was assessed using the self-perceived burden scale. For caregivers, burden was assessed using the Oberst caregiving burden scale and Bakas caregiving outcomes scale - difficulty subscale. Caregivers' depression was assessed using the patient health questionnaire-9. Mean scores and standard deviations (SD) were calculated. Multiple regression analysis was done to determine the predictors of caregiver outcomes. Results: Patients thought that they were a moderate to severe burden on their caregivers (mean score 36.31, SD 3.48). Caregivers perceived themselves as moderately burdened, and thought that their lives had changed for the worse because of caregiving (mean score 2.82, SD = 0.98). Caregivers were moderately depressed (mean score 1.80, SD 0.42). Multiple regression analysis showed that the perceived difficulty of caregiving tasks and patients' self-perceived burden predicted the caregiver outcomes. The difficulty of caregiver tasks explained 38% of the overall variance in the caregiver outcomes. Patient's self-perceived burden on their caregivers explained 16.4% of the variance. Conclusion: Factors that affect the burden on caregivers of dialysis patients should be identified and interventions considered to support caregivers and reduce this burden.

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Caregiving burden and mental health problems among family caregivers of people with dementia in rural Uganda

Background Alzheimer's disease and related dementias are associated with increasing health burden in low- and middle-income countries. Less well-recognized is the potential health burden experienced by other affected individuals, such as family caregivers. In this study, we sought to profile the burden of care and its association with symptoms of depression and anxiety among informal caregivers of people living with dementia in rural southwestern Uganda. Method We conducted a cross-sectional study of 232 family caregivers of people with dementia. The key measured variables of interest were caregiving burden (Zarit Burden Index) and symptoms of depression and anxiety (Depression Anxiety Stress Scales). We fitted multivariable regression models specifying depression and anxiety symptoms as the primary outcomes of interest and caregiving burden as the primary explanatory variable of interest. Results Family caregivers of people with dementia experience significant caregiving burden, with each item on the Zarit Burden Index endorsed by more than 70% of study participants. Nearly half [108 (47%)] of caregivers had Zarit Burden Interview scores >60, suggestive of severe caregiving burden. In multivariable regression models, we estimated a statistically significant positive association between caregiving burden and symptoms of both depression [b = 0.42; 95% confidence interval (CI) 0.34-0.49] and anxiety (b = 0.37; 95% CI 0.30-0.45). Conclusion Family caregivers of people with dementia in rural Uganda experience a high caregiving burden, which is associated with symptoms of depression and anxiety. Interventions aimed at reducing caregiving burden may have important collateral mental health benefits.

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Vietnamese Adult-Child and Spousal Caregivers of Older Adults in Houston, Texas: Results from the Vietnamese Aging and Care Survey (VACS)

Vietnamese are the largest Asian ethnic group in Houston, Texas; however, research on this population is scarce. To address this dearth of knowledge, we developed the Vietnamese Aging and Care Survey. The objective of the study was to explore the sociodemographic and health characteristics of Vietnamese adults aged 65 years and older (n = 132) and their family caregivers (n = 64). Adult-child caregivers (n = 41) were aged between 21 and 65 years old. The majority were married, working, female, and in good to excellent health. Spousal caregivers (n = 23) were between 57 and 82 years old, retired, female, and in fair to good health. Adult children received more caregiving-related help from others compared to spousal caregivers; however, they felt more caregiver burden, had more perceived stress, and were in challenging relationships with care recipients. Differences in life stages of adult-child versus spousal caregivers may contribute to these results. Implications are discussed.

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Stress-related vulnerability and usefulness of healthcare education in Parkinson's disease: The perception of a group of family caregivers, a cross-sectional study

Parkinson's Disease is associated with a high assistive complexity, thus generating in caregivers a burden proportional to the intensity of the care provided. This study aims to evaluate whether the stress-related level of caregivers is related to their perception of the need for healthcare education. A cross-sectional study was conducted on 69 family caregivers that completed the Stress-related Vulnerability Scale (SVS scale) with a tool of proposed interventions stratified according to caregivers' need as “nothing”, “somewhat”, “moderately” and “extremely”. A direct association between the SVS scale and the perception of the usefulness of interventions was detected, and significant differences were observed for “Caregivers tele-support group” and “Peer-led support group” interventions, thus suggesting an important role for caregivers' emotional status in considering of training courses. Caregivers are split between low vulnerability, with minimal perception of training need, and high burden state with the acute necessity of support to manage patients.

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Social support and depressive symptoms among family caregivers of older people with disabilities in four provinces of urban China: the mediating role of caregiver burden

Background: To examine the relationship between social support and depressive symptoms of Chinese family caregivers of older people with disabilities, and to evaluate the role of caregiver burden as a potential mediator of that relationship.; Methods: A survey questionnaire was completed face-to-face by 567 primary family caregivers of older people with disabilities in four provinces in China. Covariates that may affect depressive symptoms, such as the characteristics of disabled people (socio-economic factors, functional and cognitive capacity) and caregivers (caregiver duration and self-rated health of caregivers) were collected. Social support was measured by the Multidimensional Scale of Perceived Social Support (MSPSS); depressive symptoms were assessed by the shortened 10 item version of Center for Epidemiological Studies Depression scale (CES-D); and the caregiver burden was assessed by the Zarit Burden Interview (ZBI).; Results: The prevalence of depressive symptoms among caregivers was 37.7%. Higher levels of social support was negatively associated with lower depressive symptoms. This relationship was partially mediated by the caregiver burden, where higher levels of the caregiver burden were negatively associated with depressive symptoms. Furthermore, caregivers who were women, spent extended time in caregiving and were in poor health, reported significantly higher depressive symptoms.; Conclusions: Our results indicated that social support was negatively associated with depressive symptoms in family caregivers and in the caregiver burden. The caregiver burden partially mediated the social support-depressive symptoms association. Interventions for family caregivers should include increasing social support, health monitoring and structured interventions to reduce the caregiver burden and attenuate family caregivers' depressive symptoms.

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Separation characterized by responsibility and guilt: Family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities

Aim and objectives: The aim of this study was to explore family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities. Background: Dementia not only affects individuals but also affects and changes the lives of close family members. An increasing number of dementia-related deaths occur in long-term care facilities; therefore, it is critical to understand how healthcare professionals support and care for residents with dementia and their families at the end of life. Design: A qualitative design with a phenomenological approach was adopted. Methods: In-depth interviews were performed with 10 family caregivers of residents in 3 Norwegian long-term care facilities. Results: The family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities were characterized by responsibility and guilt. Admission to a long-term care facility became a painful relief for the family caregivers due to their experiences with the poor quality of palliative care provided. The lack of meaningful activities and unsatisfactory pain relief enhanced the feelings of responsibility and guilt among the family caregivers. Despite the feelings of insecurity regarding the treatment and care given during the early phase of the stay, the family caregivers observed that their close family member received high-quality palliative care during the terminal phase. The family caregivers wanted to be involved in the care and treatment, but some felt that it became a heavy responsibility to participate in ethical decision-making concerning life-prolonging treatment. Conclusions: The family caregivers experienced ongoing responsibility for their close family members due to painful experiences with the poor quality of the palliative care provided. When their expectations regarding the quality of care were not met, the palliative care that was offered increased their feeling of guilt in an already high-pressure situation characterized by mistrust. 

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Optimism as a key to improving mental health in family caregivers of people living with Alzheimer's disease

Objective: The aim of the present work was to study the serial multiple mediating role of optimism, perceived social support and subjective burden in the relationship between objective burden and psychological distress in caregivers of people with Alzheimer´s Disease (AD). Method: One hundred and forty family caregivers of people living with AD were recruited from randomly selected Alzheimer Association Centres. They answered the General Health Questionnaire (GHQ), the Life Orientation Test-Revised (LOT-R), the Functional Social Support Questionnaire (DUKE.UNC), the Zarit Burden Interview (ZBI) and questions relating to gender, age and the amount of time spent on daily caregiving. Results: Results indicated that objective burden and subjective burden were both high in these caregivers. Optimism mediated on psychological distress through social support and through subjective burden with a full mediation role. When comparisons between indirect effects were performed, optimism was the mediator with the greatest effect between objective burden and psychological distress. Conclusion: This study highlights the indirect role of optimism and the advantages that interventions in optimism training in the early stages of the person with AD could produce. Thus, alleviating subjective burden and increasing perceived social support, which would lead to an improvement in the mental health of family caregivers of people with AD.

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Objective and Subjective Dementia Caregiving Burden: The Moderating Role of Immanent Justice Reasoning and Social Support

Caregiving burden significantly effects the physical and mental health of family dementia caregivers. While the association between objective caregiving burden (OCB) and subjective caregiving burden (SCB) of family dementia caregivers is well documented, little is known as with how the association is moderated by the configuration of intrapersonal resource (e.g., immanent justice reasoning) and interpersonal resource (e.g., social support). The present study collected cross-sectional data on 157 major family caregivers of non-institutionalized persons with dementia in an urbanizing region of Western China's Sichuan Province. They responded to questions on daily time spent on caregiving, the short version of Zarit Burden Interview (ZBI), a sub-scale of a caregiver meaning scale, Social Support Rating Scale (SSRS), and demographic questions. Controlling for the demographic variables of the caregivers, this study found that the objective and subjective dementia caregiving burden were significantly associated (p < 0.001), and immanent justice reasoning was positively correlated with subjective burden (p < 0.01). Moreover, the association between OCB and SCB was significantly positive when social support and immanent justice reasoning were both high (p < 0.001), but neutral when social support was high and immanent justice reasoning was low. The association between OCB and SCB was significantly positive when social support and immanent justice reasoning were both low (p < 0.05), but neutral when social support was low and immanent justice reasoning was high. This research suggests the importance of developing intervention programs that consider the configuration of the external supporting resources and internal meaning-making of caregiving of the family dementia caregivers.

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Informal caregiving for dementia patients: the contribution of patient characteristics and behaviours to caregiver burden

Objectives The burden often associated with informal caregiving for patients with dementia is associated with negative effects on health, both physiologically and in terms of caregiver cognition. There is wide variation in the level of burden experienced by dementia caregivers. To better understand caregiver burden, it is thus important to understand the factors associated with level of burden. Methods In the current study, we collected carer burden and putative associated factors at baseline, 6 and 12 months. Hierarchical regression was used to assess the impact of these factors on caregiver burden. We assessed self-reported carer burden, patient behavioural and safety issues, and level of difficulty associated with providing assistance with activities of daily living (ADL). Patients' age was also recorded, and trained nurses assessed patient cognitive performance using the quick mild cognitive impairment screen. Results At baseline, patients' age, cognition and ADLs were associated with burden, and safety and challenging behaviour were both significantly associated with burden independent of the other factors. Change in burden was associated with change in carer-reported safety at 6-month follow-up, and with change in safety and change in carer-reported challenging behaviours at 12-month follow-up. Conclusions Safety issues and challenging behaviours are associated with carer burden, even after accounting for cognitive and functional impairment in the person with dementia. As dementia progresses, monitoring these factors may help to inform stress-management strategies for caregivers.

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Informal Caregiver Burden and Benefits and Older Adult Mortality: A Survival Analysis

Objective: Informal caregivers are crucial to maintaining older adults' health, but few studies examine how caregiving receipt is associated with older person longevity. In a nationally representative sample, we prospectively explore whether and how having an informal caregiver is associated with older adult overall mortality, and how caregivers' burden and benefits perceptions relate to care recipient mortality.; Methods: We match six National Health and Aging Trends Study waves (2011-2016) with 2011 National Study of Caregiving data, conducting survival analysis on 7,369 older adults and 1,327 older adult-informal caregiver dyads.; Results: Having an informal caregiver is associated with 36% (p<0.001) higher mortality risk over 6-year follow-up, adjusting for demographic, economic and health factors. Older adults whose caregivers perceive only burden have 38% higher (p<0.05) mortality risk than those with caregivers reporting neither burden nor benefits. This risk is reduced from 38% higher to 5% higher (p<0.001) for older adults with caregivers reporting benefits alongside burden, compared to those with caregivers reporting neither perception.; Discussion: Having a caregiver may signal impending decline beyond known mortality factors. However, interventions to increase caregivers' benefit perceptions and reduce their burden may decrease mortality risk for older adults with declining health and functional ability.

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How cancer of oral cavity affects the family caregivers? - A cross-sectional study in Wardha, India, using the Caregiver Quality of Life Index - Cancer questionnaire

Introduction: Oral cancer is now a major public health problem in India. It does not only affect the patient, but also has a deep psychosocial impact on the family caregivers who are deeply involved with the cancer patient for nursing, timely medication, and consulting the doctor. Studies have found that the caregivers often suffer from depression, anxiety, and fear of losing their near and dear ones. This study aims to capture the psychosocial impact of oral cancer on the family caregivers.; Materials and Methods: This was a cross-sectional study carried out in a tertiary care hospital with the primary caregivers of those oral cancer patients who completed their treatment and came for follow-up after 2-3 months of treatment completion. The study participants were recruited till a sample size of 100 was reached. This was adequate to report proportions with an error of 10%. We have used "The Caregiver Quality of Life Index - Cancer" scale to capture the psychosocial impact of oral cancer on primary caregiver of the patient. The study was initiated after obtaining approval from the Institutional Ethics Committee. Informed written consents were obtained from all the study participants before beginning the interviews.; Results: Caregivers played an important role in the recovery of the patients. However, the strain of caregiving resulted in increased emotional stress among them. We found 56% of the family caregivers were female and 41% were male. Majority of the caregivers who accompanied the patients to hospital were the spouses. For the caregivers, the mean score for burden of the disease was found to be 60.0 (±20.2), that for disruption was 50.4 (±21.7), and for positive adaptation was 61.4 (±20.7).; Conclusion: Caregivers, who are usually invisible to the health-care team, should be recognized and their mental and physical well-being should also be given attention.

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Functional Support and Burden Among Out-of-Home Supporters of Heart Failure Patients With and Without Depression

Objective: Over 20% of patients with heart failure (HF) experience clinical depression, which is associated with higher rates of mortality, morbidity, and hospitalization. Support from family members or friends (whom we refer to as care partners [CPs]) can lower the risk of these outcomes. We examined whether HF patients with depression received assistance from CPs living outside of their homes. Further, we examined whether patient depression was associated with support-related strain among out-of-home CPs. Method: We analyzed baseline survey data from 348 HF patients with reduced ejection fraction and their CPs. Patients with scores on the Center for Epidemiological Studies Depression Scale–10 (Kohout, Berkman, Evans, & Cornoni-Huntley, 1993) of ≥10 were classified as having clinically significant depressive symptoms (i.e., depression). Outcomes included CP-reported hr per week helping with health care and talking with patients via telephone and scores on the Modified Caregiver Strain Index. Negative binomial regression models examined differences in the amount of in-person and telephone support for patients with and without depression, controlling for patients' comorbidities, living alone, CP geographic distance, and CP emotional closeness to the patient. Results: CPs provided more in-person support to HF patients with depression (M = 3.64 hr) compared with those without depression (M = 2.60 hr per week, incident rate ratio [IRR] = 1.40, p =.019). CPs provided more telephone support to patients with depression (M = 3.02 hr) compared with those without depression (M = 2.09 hr per week, IRR = 1.42, p <.001). Patient depression had no effect on caregiver burden (IRR = 1.00, p =.843). Conclusion: Patients with clinically significant depressive symptoms receive more in-person assistance and telephonic support from CPs. Despite that additional contact, caregiver burden was not greater among the supporters of depressed patients.

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Family Caregiving for Older Adults

Family members are the primary source of support for older adults with chronic illness and disability. Thousands of published empirical studies and dozens of reviews have documented the psychological and physical health effects of caregiving, identified caregivers at risk for adverse outcomes, and evaluated a wide range of intervention strategies to support caregivers. Caregiving as chronic stress exposure is the conceptual driver for much of this research. We review and synthesize the literature on the impact of caregiving and intervention strategies for supporting caregivers. The impact of caregiving is highly variable, driven largely by the intensity of care provided and the suffering of the care recipient. The intervention literature is littered with many failures and some successes. Successful interventions address both the pragmatics of care and the emotional toll of caregiving. We conclude with both research and policy recommendations that address a national agenda for caregiving.

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Factors Affecting Psychological Burden on the Informal Caregiver of Patients With Cirrhosis: Looking Beyond the Patient

Cirrhosis leads to considerable morbidity and mortality, compromises quality of life, and often necessitates assistance in activities of daily living. An informal caregiver bears the psychological burden of coping with the needs of the patient and the knowledge of morbid prognosis of a loved one. This aspect is rarely recognized and almost never addressed in a clinical practice. This cross-sectional study assessed the factors influencing psychological burden of cirrhosis on the caregivers in a predominantly lower-middle socioeconomic class Indian population. Patients underwent psychometric tests [Psychometric Hepatic Encephalopathy Score (PHES)], and questionnaires for quantifying caregiver burden [Perceived Caregiver Burden (PCB) and Zarit Burden Interview (ZBI)] and assessing depression [Beck Depression Inventory (BDI)] and anxiety [Beck Anxiety Inventory (BAI)] were administered. One hundred patients with cirrhosis [70% male, 27% with past hepatic encephalopathy (HE), and 53% with minimal HE] and their caregivers (66% women, 81% spouse, 26.51 years of mean relationship) were evaluated. Caregiver burden scores were higher in patients with previous overt HE than in those without previous overt HE [PCB (74.63 vs. 66.15, P = 0.001), ZBI (27.93 vs. 21.11, P = 0.023), BDI (11.63 vs. 8.96, P = 0.082), and BAI (11.37 vs. 8.12, P = 0.027)]. Similarly, caregivers of patients with minimal HE had higher caregiver burden that those of patients who did not have minimal HE [PCB (70.74 vs. 65.85, P = 0.027), ZBI (26 vs. 19.51, P = 0.015)]. Burden scores correlated well with each other and with liver disease severity scores and negatively correlated with socioeconomic status. Repeated hospital admissions, alcohol as etiology, and lower socioeconomic status were the independent predictors of caregiver burden. Higher perceived burden is common in caregivers of patients with cirrhosis. Repeated hospital admissions, alcoholism, and lower socioeconomic status influence caregiver burden. 

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Evaluating the Effect of Family-Centered Intervention Program on Care Burden and Self-Efficacy of Hemodialysis Patient Caregivers Based on Social Cognitive Theory: A Randomized Clinical Trial Study

Background: Caregivers of hemodialysis patients spend a large amount of time providing care to these patients while tolerating fatigue and stress. This study evaluated a family-centered empowerment program on the care burden and self-efficacy of hemodialysis patient caregivers based on social cognitive theory.; Methods: In this randomized clinical trial, 70 family caregivers of hemodialysis patients in Isfahan, Iran, were selected and randomly allocated to intervention and control groups, in 2015-2016. Two questionnaires were used to collect the family caregivers' characteristics, care burden, and self-efficacy, and patients' negative and positive outcomes expectancies. Data were analyzed using SPSS before, immediately after, and 2 months after the intervention.; Results: There was no significant difference in the mean scores of care burden, positive outcomes expectancies, negative outcomes expectancies, and self-efficacy between the two groups before the intervention. However, there were significant differences in the post-test and follow-up data analyses (P<0.05).; Conclusion: Given the degenerative nature of chronic kidney disease, it can be considered as a source of long-term and chronic stress for caregivers. Therefore, by implementing an empowerment program, caregiving behaviors can be improved, positive outcomes expectancies can be increased, and negative outcomes expectancies can be reduced.

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Evaluating emotional distress and health-related quality of life in patients with heart failure and their family caregivers: Testing dyadic dynamics using the Actor-Partner Interdependence Model

Purpose: 1) To compare levels of emotional symptoms and health-related quality of life between patients with heart failure and their family caregivers; and 2) to examine whether patients' and caregivers' emotional symptoms were associated with their own, as well as their partner's health-related quality of life. Method: In this cross-sectional study, 41 patients-caregiver dyads (78% male patients, aged 68.6 years; and 83% female caregivers, aged 65.8 years) completed all nine dimensions of the Brief Symptom Inventory and the Minnesota Living with Heart failure Questionnaire. Dyadic data were analysed for 6 sub-scales of the Brief Symptom Inventory, using the Actor–Partner Interdependence Model. Results: There were no statistically significant differences in emotional symptoms and health-related quality of life between patients with heart failure and their caregivers. Patients' and caregivers' emotional symptoms were associated with their own health-related quality of life. Caregivers' anxiety, phobic anxiety, obsession-compulsion, depression and hostility negatively influenced their partner's (i.e. the patient's) health-related quality of life. There were no partner effects of patients' emotional symptoms on the health-related quality of life of caregivers. Conclusions: The results of this study suggest that patients may be particularly vulnerable to the emotional distress, i.e. thoughts, impulses and actions of their caregivers. It may be possible to improve patients' health-related quality of life by targeting specific detrimental emotional symptoms of caregivers. 

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Effects of supporting patients with dementia: A study with dyads

Purpose: This study aimed to examine the factors associated with the development of higher burden in informal caregivers of patients with dementia, using dyadic data.; Design and Methods: Seventy-two dyads of patients with dementia and their informal caregivers were assessed, the former in terms of behavioral-psychological symptoms and autonomy, the latter in terms of burden and individual needs.; Findings: Caregivers at risk for developing higher burden are those who are female, whose care recipient present psychiatric symptoms and lower autonomy, and those who recognize the need for more information/support.; Practice Implications: Interventions should offer caregivers the tools to provide care, maintaining their psychological well-being. Interventions should target not only common aspects of caregiver burden but also the specificities of caring for a person with dementia.

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The Effect of National Family Caregiver Support Program Services on Caregiver Burden

Extant evidence on the effectiveness of caregiver programs in alleviating caregiver burden is mixed, underscoring the need for further investigations. This study evaluated the effect of the National Family Caregiver Support Program (NFCSP) educational services and respite care on caregiver burden. We used survey data from caregivers assigned to program (n = 491) or comparison (n = 417) group based on their reported use of NFCSP services. Adjusted difference-in-differences (DiD) analysis found an increase in mean burden scores for both groups from baseline to 6 or 12 months. Among program caregivers receiving ≥4 hr of NFCSP respite care per week (n = 307) and matched comparisons (n = 370), burden scores decreased slightly for program caregivers (-0.095 points), but increased for comparison caregivers (+0.145 points). The DiD (0.239 points) was not statistically significant. More research is needed to determine the minimum amount of respite care needed to positively impact caregiver burden.

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Educational intervention for informal caregiver of person with dementia: A systematic review

The role of caregivers is very important in the management of person with dementia, where it is not uncommon for them to experience psychological distress. However, the level of distress can be managed and reduced through strategic educational intervention. A systematic review has been conducted through searching Medline, Science direct, Cochrane library and EMBASE databases to provide a narrative synthesis that elaborate on methods and outcomes of the educational intervention among informal caregiver of person with dementia. From a total of 5125 records, eight studies were selected and included in this review, where the results show that educational intervention can be implemented either as individual or group intervention. Group intervention methods mainly focus on training programs such as workshops and lectures, and also group-based discussions. While for individual intervention, most of the activities were implemented through self-learning using technology or computer-based systems. In conclusion, based on the outcome of the studies, both methods of implementations are found to be useful in reducing psychological distress of the informal caregiver. 

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A cross-sectional study of family caregiver burden and psychological distress linked to frailty and functional dependency of a relative with advanced dementia

Psychological health of caregivers of people with dementia is a major public concern. This study sought to determine the relationship between caregiver burden, psychological distress, frailty and functional dependency of a relative with advanced dementia. Persons with dementia and their caregivers (102 dyads) participated in this Portuguese community based cross-sectional study. Data were collected using the Clinical Dementia Rating Scale, a sociodemographic questionnaire, the Zarit Burden Interview, the Brief Symptoms Inventory and the Edmonton Frail Scale. Alzheimer's disease was the most common type of dementia among the recipients of care, who showed moderate (42.2%) to severe (52.9%) dementia. Among them 35.3% exhibited moderate and 45.1% severe frailty. Family caregivers reported moderate (76.5%) to severe burden (18.6%). Psychological distress was very high among family caregivers. Results show that people with dementia exhibited moderate (35.3%) or severe frailty (45.1%) and that a severe frailty was found in people with moderate dementia. A one-way ANOVA was conducted between the Global Severity Index and some sociodemographic variables. ANOVA reached p <.01 for employment status of the caregiver, assistance and professional support, and psychiatric history; and p = 0.01 for caregiver age and years of caregiving. Although caregivers reported benefit from the supportive approach offered by the multidisciplinary home care team, high levels of distress and associated burden were found, which might decrease their capacity to care for the person with dementia and their own health and well-being.

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A comparison of primary and secondary caregivers of persons with dementia

Having 2 or more relatives involved in the informal care of people with dementia is frequent worldwide. There are, however, few comparisons of primary and secondary caregivers and even fewer of those who are caring for the same person. Our study aimed to contrast these 2 experiences of caregiving. We compared 2 related samples of 61 primary and 61 secondary family caregivers of the same persons with dementia in a nonrandomized cross-sectional study. Caregivers' main outcome assessments were the Zarit Burden Interview (for subjective burden), the General Health Questionnaire (for psychological distress), and the Positive Aspects of Caregiving scale. We controlled for caregiver variables (e.g., demographics, caregiving arrangements, social support, sense of coherence) and the neuropsychiatric symptoms of dementia. Subjective burden was higher in primary than secondary caregivers (p = .013), but positive aspects of caregiving did not differ (p = .150). Psychological distress was high at clinically relevant levels in primary and secondary caregivers, without statistically significant differences between groups (p = .456). The findings demonstrate that notwithstanding the difficulties faced by primary caregivers, secondary caregivers may also experience clinically significant distress. Therefore, their needs for assistance and support should be addressed more systematically. These findings call for systemic family-focused interventions in dementia that address the support each person provides or might provide, as well as the psychological distress each person may feel. 

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Changes in Family Dynamics in Caregiving for People With Dementia in South Korea: A Qualitative Meta-Synthesis Study

Living with a person with dementia considerably affects the lives of both the primary caregiver and the entire family. This study aimed to synthesize the findings of qualitative studies that explored dementia caregivers' experiences, to further understand the impact of dementia caregiving on family dynamics. Thirty-seven qualitative studies were analyzed and synthesized according to the meta-synthesis methods suggested by Sandelowski and Barroso. Four themes were identified to describe the impact of dementia caregiving on the family: cracked foundation of the family caused by dementia, voluntary or involuntary setup of a marked boundary of care, family as supportive foreground versus reluctant or interfering background, and re-established relationships within and outside the family. The findings illuminate that dementia caregiving has a destructive impact on the entire family, and therefore, it is imperative to develop interventions and infrastructures for both the caregiver and the entire family of individuals with dementia. 

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Caregiver identity theory and predictors of burden and depression: Findings from the REACH II study

Objective: To examine the relationship between care recipient (person with Alzheimer's disease) ability to perform daily tasks and caregivers' (CG) perceived burden and depression, guided by the caregiver identity theory. We also examine the mediating effect of CG abilities to meet their basic needs. Methods: This study utilizes the baseline data of the REACH II study. Spearman's rho (ρ) was used to test for relationships between burden, reported depression, and each ADLs and IADLs. To further explore the relationship between burden and each ADLs and IADLs, structural equation modeling was conducted using Mplus 8.0. Results: Reported CG total scores indicated increased perceived CG burden with greater number of assisted daily activities. CG depression scores were significantly predicted by reported burden scores and caregiver's ability to pay for basic needs. Importantly, 34.6% of variation in CG reported depressions scores were explained by reported burden scores. A multivariate regression model with reported burden scores, controlling for caregiver's ability to pay for basic needs, explained 36.6% of the variance in CG depression scores. Burden scores and CG ability to pay for basic needs significantly predicted depression scores. Results from the three models indicated that CG burden fully mediated the relationship between daily living skill scores and CG depression. Conclusion: Our study findings suggest the need to more closely examine the link between AD caregiving, financial instability, and mental health and bolster support for policies and programs that offer tangible supports and services to offset the costs of informal AD CG.

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Berlin Inventory of Caregiver Stress-Dementia (BICS-D)

Background and Objectives: Dementia is becoming increasingly prevalent and family caregivers have been providing most of the care for persons with dementia. This caregiving is a mentally and physically demanding task. "The Berlin Inventory of Caregiver Stress-Dementia" (BICS-D) is a theory driven, multidimensional assessment which was developed as part of the Longitudinal Dementia Caregiver Stress Study (LEANDER).; Research Design and Methods: The inventory consists of 25 subscales with a total of 121 items. Analyses of the psychometric properties of the inventory were based on responses from 594 caregivers.; Results: Factor analyses confirm the multidimensionality of the inventory. The reliabilities of the subscales (Cronbach's α) are between .72 and .95. Validity and sensitivity of the inventory were also confirmed. Differing patterns of burden could be demonstrated for different relatives (partners, children, and daughters-in-law) as well as for different degrees of severity of dementia.; Discussion and Implications: The scores derived for the instrument have support for reliability and validity, and sensitivity to change. It is suitable for the differential measurement of burden experienced by different subgroups of caregivers as well as for the evaluation of interventions. The different subscales of the battery can also be used separately, depending on the study's objectives.

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Association between sleep, care burden, and related factors among family caregivers at home

Aim: Several studies have reported a negative correlation between depressive symptoms and family caregivers' (FCs) subjective sleep status. However, there is a paucity of information on the association between objective/subjective sleep status, care burden, and related factors.; Methods: Participants were 23 pairs of care receivers (CRs; Mage = 82.7 ± 8.5 years; 69.6% women) receiving long-term care at home and their FCs (Mage = 66.9 ± 11.0 years; 69.6% women). At baseline, demographic data, subjective sleep status (Pittsburgh Sleep Quality Index; PSQI), WHO-5 well-being, depressive mood, and frequency of going outdoors were collected. FCs wore a small, wrist-worn device with an accelerometer to assess objective sleep status for a consecutive 24-h 2-week period, and they answered the Zarit Burden Interview short version (ZBI) every night before sleep. After 3 months, CR status was collected and analysed retrospectively.; Results: The mean total sleep time over 2 weeks was 349.5 ± 69.6 min. The mean ZBI score over 2 weeks was 8.8 ± 6.8, which was significantly correlated with total sleep time (r = -0.42; P < 0.05), total time in bed (r = -0.44; P < 0.05), PSQI (r = 0.62; P < 0.01), frequency of going outdoors by CRs (r = -0.42; P < 0.05), and WHO-5 well-being among CRs (r = -0.50; P < 0.05). Multiple regression analyses revealed that total sleep time (β = -0.51; P < 0.05) was significantly associated with care burden (adjusted R2 = 0.45). At the 3-month follow-up, four CRs had been hospitalised or died, and their FCs displayed significantly severe care burden and slept less than at baseline.; Conclusions: Reduced objective total sleep time is significantly associated with the severity of care burden among FCs. Home-based care is critical in Japan; therefore, it is meaningful to determine how to reduce care burden.

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Worry about Performance: Unravelling the Relationship between 'Doing More' and 'Doing Better'

Objective: Recent studies have described worry about caregiver performance (WaP) as a distinct dimension of caregiver burden. We aimed to explore care recipient and caregiver characteristics between the concordant and discordant WaP groups in a population of caregivers of older adults with cognitive impairment. The secondary objective is to explore if there are differences between high and low WaP subsets in the 'doing more' and 'doing better' groups. Design, setting and participants: This is a retrospective study of 936 dyads of community-dwelling older adults with cognitive complaints and their primary family caregiver from a hospital in Singapore. Measurements: We performed descriptive and inferential statistics of the characteristics of caregivers and patients. We categorized caregiver-patient dyads into four groups, namely concordant (high vs low WaP) and discordant ('doing more' vs 'doing better') groups. For both concordant and discordant groups, we further defined low and high WaP subgroups using tertile cutoffs. Results: The concordant low WaP group is predicted by the spousal relationship (p<.001) and care recipients with fewer neuropsychiatric symptoms (p<.001). There is no significant difference between the discordant groups, which were predominantly the adult children. Further analysis of subgroups found that in the 'doing better' group, there were more spouses in the high as compared to low WaP subgroups, with the reverse true in the 'doing more' group. In the 'doing more' group, caregivers with high WaP also had higher total ZBI (p<0.05) with higher factors (Fl, F2 and F3) scores (p<0.05). They also endorsed higher NPI-Q scores (p=0.045) particularly in the domain of depression / dysphoria (p=0.034). These differences are not seen in the 'doing better' group. Conclusion: Our study suggests an association with caregiver characteristics (adult child) and disruptive behavior in the 'do more' high WaP discordant group. Delineating into the high and low WaP subgroups can help us identify the 'do more' high WaP subgroup that merits further attention and early intervention.

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"Tipping point" concept analysis in the family caregiving context

Aim: Analyze the concept "tipping point" in the older adult family caregiving context to further knowledge about caregiving families, enhancing transdisciplinary theory, research, and practice. Background: While used commonly in some disciplines, how "tipping point" has been used in health care, generally, and in relation to caregiving families, specifically, is less clear. This project was conducted to offer conceptual clarity to tipping point. Design: Walker and Avant's framework. Data Source: Searches of scholarly literature in PsycINFO, CINAHL, and PubMed using the search term "tipping point" in either title or abstract. Review Methods: Definitions used were extracted; instances when the concept was implied but the actual term "tipping point" was not used and contexts where the term was used or implied were identified. Results: The composite definition of a caregiving tipping point is a seemingly abrupt, severe, and absolute change event involving either the older adult or caregiver(s), or both that indicates a breakdown in the status quo of the caregiving system. Conclusions: Transdisciplinary research, care, and policy should treat caregiving families as complex systems, use longitudinal assessments, and include colloquial communication. Early detection of impending tipping points will provide family‐centered decisional support and enhance families' quality of life and safety.

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Telephone-based behavioral activation intervention for dementia family caregivers: Outcomes and mediation effect of a randomized controlled trial

Objectives: The study examined the effects of a telephone-administered psycho-education with behavioral activation intervention (TBA) for family caregivers of person's with Alzheimer's dementia to reduce levels of depressive symptoms and burden and to enhance relationship satisfaction with the care-recipient METHODS: A double-blinded randomized trial compared TBA with telephone-based psycho-education with general monitoring (TGM). Ninety-six dementia caregivers were randomized. Both conditions received four weekly psycho-education sessions led by a social worker. TBA participants then received eight bi-weekly behavioral activation practice sessions delivered by paraprofessionals. TGM participants received eight bi-weekly monitoring sessions by paraprofessionals.; Results: As compared to TGM, TBA participants reported significantly larger reductions in depressive symptoms and burden and larger improvement in relationship satisfaction. Self-efficacy for controlling upsetting thoughts was found to have a partial meditation effect between TBA and the reduction of depressive symptoms. Qualitative feedback suggested that TBA participants expressed unique gains in awareness and developing new ways of reappraising the caregiving situation.; Conclusion: TBA was an effective intervention to reduce depressive symptoms and burden as well as to enhance relationship satisfaction in dementia caregivers.; Practice Implications: The use of telephone and trained paraprofessionals can enhance the accessibility and sustainability of behavioral activation intervention for dementia family caregivers.

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Supporting family caregiver engagement in the care of old persons living in hard to reach communities: A scoping review

Today, 8.5% of the world's population is 65 and over, and this statistic will reach 17% by 2050 (He et al., U.S. Census Bureau, international population reports, P95/16‐1, An ageing world: 2015, U.S., 2016). They are the people who, with increasing age, will find themselves more closely interfacing with the national health system, which in many countries shows strong imbalances between rural and urban areas. In this context, a fundamental role is played by the relatives who find themselves becoming informal caregivers to compensate for lack of services. To date, however, little has been done to help these people. In this article, we want to identify the nature and extent of research evidence that had its objective to help informal caregivers in rural, hard to reach areas (Grant & Booth, Health Information & Libraries Journal, 2009, 26, 91). Following the approach set out by Arksey and O'Malley (International Journal of Social Research Methodology, 2005, 8, 19), we conducted a scoping review in May 2018 and closed the review with an update in September 2018. We identified 14 studies published from 2012, the European Year of Active Ageing, promoted by the European Commission, which had three domains of implementation: emotional support to decrease the emotional burden of caregivers, educational support to increase their skills, and organisational support to improve the mobility of caregivers and carereceivers. Although informal caregivers play a fundamental role in many countries, the studies that have been involved in alleviating their caring burden are few; nevertheless, they provide interesting indications. This lack of attention confirms how this portion of the population is still neglected by scientific research and risks having unequal access to health and social care. Future research is needed, not only to create and improve services to caregivers in rural, hard to reach areas, but also to evaluate and focus on the participation and the engagement of caregivers in the co‐design of these services. 

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Sleep Quality in Caregivers of Older Patients with Schizophrenia Spectrum and Bipolar Disorders: A Case-Control Study

Objectives: Prior literature has documented the global burden of serious mental illnesses. The present study aimed to compare the sleep quality in caregivers of older patients with schizophrenia spectrum and bipolar disorders with control participants who did not serve as caregivers. Methods: We performed a case-controlled, cross-sectional study among family caregivers of older patients with psychotic disorders in Razi Hospital, Tunisia. Subjective sleep quality was assessed using the Pittsburgh Sleep Quality Index Scale (PSQI). Results: Fifty caregivers of older patients (≥ 60 years) with schizophrenia spectrum and bipolar disorders, and 50 matched controls were enrolled. The three sub-dimensions of the PSQI, namely subjective sleep quality, sleep duration, and sleep efficiency, as well as overall PSQI scores, were worse for caregiver participants. Hierarchical multiple regression analyses predicting PSQI scores revealed that caregivers' age and marital status were the only significant predictors in the final model. Conclusions: Older adults with severe mental disorders constitute a vulnerable population which generates a significant burden of care, and impacts their caregivers' subjective sleep quality. Clinical Implications: Family interventions, including sleep interventions, should be considered as an integral component of treatment for serious mental illnesses. When promoting sleep quality, older and single caregivers should be targeted.

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The relationship between comorbidities in dementia patients and burden on adult–child primary caregivers: Does having a secondary caregiver matter?

Primary family caregivers of patients with dementia often experience high caregiver burden and significant decline in a range of health outcomes. The current study examined the relationship between medical comorbidities of inpatients with dementia and caregiver burden in adult–child primary caregivers, and the buffering effect of having a secondary caregiver on the relationship between patients' comorbidities and caregiver burden. The study is a secondary analysis of data from a cross‐sectional observational study design. The sample comprised 477 dyads of inpatients with dementia and adult–child primary caregivers attending the neurological department of two grade A hospitals. All the inpatients were assessed with the Charlson Comorbidity Index (CCI) and the Mini‐Mental State Examination (MMSE). All the adult–child primary caregivers were assessed with the Zarit Burden Interview (ZBI) and completed the questionnaires on socio‐demographic data, caring hours, presence of secondary caregiver, and the level of impairment of the patient. Higher burden was associated with higher scores on the CCI and having a spouse of the patient as the secondary caregiver. A significant interaction occurred between the CCI and caregiver burden when having a spouse as the secondary caregiver, indicating the negative effect of the CCI on caregiver burden was greater when the spouse of the patient served as the secondary caregiver. In summary, the negative impact of patients' comorbidities on caregiver burden in adult–child primary caregivers was heightened when the secondary caregiver role was undertaken by the spouse of the patient with dementia. These results may inform programmes targeted to improve care arrangements for people with dementia and their caregivers.

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Quality of Life in Patients With Breast Cancer: The Influence of Family Caregiver's Burden and the Mediation of Patient's Anxiety and Depression

Previous research showed that family caregiver's perception of burden can influence patient's report on their quality of life (QoL). The present study investigated the relationship between the two variables by considering the role of patient's anxiety and depression. A total of 382 dyads of Chinese breast cancer patients and their family caregivers participated in this study. The results showed that the mediation model fitted the data well (χ = 49.859; df = 16; χ/df = 3.116; RMSEA = 0.05; TLI = 0.928; CFI = 0.959). It indicated that family caregiver's burden influenced patient's QoL negatively, and this relationship was partially mediated by patient's anxiety and depression.

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Sleep disturbances in caregivers of persons with dementia: contributing factors and treatment implications

Estimates suggest that there are more than 10 million adult caregivers of persons with dementia, two-thirds of who experience some form of sleep disturbance during the course of their caregiving career. Health care professionals are in the best position to detect and address this significant public health problem. Three major contributors to caregiver sleep disturbance are discussed in this paper: (1) the presence of caregiver disrupted sleep routines; (2) caregiver burden and depression; and, (3) the caregiver's physical health status. Successful treatment of a caregiver's sleep disturbance requires careful consideration of each of these contributors. We review and analyze the scientific literature concerning the multiple complex factors associated with the development and maintenance of sleep disturbances in caregivers. We provide a clinical vignette that illustrates the interplay of these contributing factors, and close by providing recommendations for clinicians and researchers treating and investigating the development and maintenance of sleep problems in family caregivers.

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Prevalence and Predictors of Distress, Anxiety, Depression, and Quality of Life in Bereaved Family Caregivers of Patients With Advanced Cancer

Objective: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer.; Methods: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient's discharge or death at specialist inpatient palliative care ward.; Results: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of "bodily pain" and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms.; Conclusion: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.

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Portrait of a Caregiver: Ethnodrama Development and Its Influence on Caregiver Well-Being

Background and Objectives: The majority of long-term care needs are placed upon family members who often receive minimal support. In this study, we collaborate with family caregivers to create an ethnodrama about their experience and assess outcomes of participation, including caregiver well-being.; Methods: Participants met over 4 months to discuss their roles as informal caregivers. Discussions were analyzed in a two-phase process and themes were developed into a script. Member checks included script review and revisions, culminating in viewing a professional performance of the play followed by a post-performance discussion and reflection. Data were gathered at six timepoints to assess caregiver well-being and longitudinal analysis was used to assess change during the course of the intervention.; Results: Twenty-two caregivers completed intervention activities. Participant reactions to the process evolved overtime, from an initial hesitance about what individuals had to offer leading to an acknowledgement of feeling heard and a desire to help others. Caregivers had high levels of burden and positive perceptions towards caregiving. Those with high levels of self-rated health had the lowest levels of burden and the most positive perceptions of caregiving.; Discussion and Implications: Developing an ethnodrama in partnership with caregivers is a unique and feasible method of caregiver support, mentoring, reflexivity, and meaning making. Promoting caregiver health early in the caregiving trajectory has the potential of reducing burden and elevating positivity towards caregiving.

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A Pilot Trial of Online Training for Family Well-Being and Veteran Treatment Initiation for PTSD

Introduction: Family members are important supports for veterans with Posttrauamtic Stress Disroder (PTSD), but they often struggle with their own distress and challenges. The Veterans Affairs-Community Reinforcement and Family Training (VA-CRAFT) website was designed to teach family members of veterans with PTSD effective ways to interact with their veterans to encourage initiation of mental health services as well as to care for themselves and improve their relationships. This article presents a pilot investigation of VA-CRAFT.; Materials and Method: Spouse/partners of veterans who had screened positive for PTSD but were not in mental health treatment were randomized to either use the VA-CRAFT website (n = 22) or to a waitlist control condition (n = 19) for 3 months. Veteran mental health service initiation was assessed posttreatment. Spouse/partner distress, caregiver burden, quality of life, and relationship quality were assessed pre and posttreatment. The study was approved by the Minneapolis VA Health Care System Institutional Review Board (IRB).; Results: Differences between groups on veteran treatment initiation were small (Phi = 0.17) and not statistically significant. VA-CRAFT participants reported large and statistically significantly greater decreases in overall caregiver burden (η2 = 0.10) and objective caregiver burden (η2 = 0.14) than control participants. Effects were larger for those with greater initial distress. Effects sizes for other partner outcomes were negligible (η2 = 0.01) to medium (η2 = 0.09) and not statistically significant. Postintervention interviews suggested that only 33% of the VA-CRAFT participants talked with their veterans about starting treatment for PTSD during the trial.; Conclusion: Results from this pilot trial suggest that VA-CRAFT holds initial promise in reducing caregiver burden and as such it could be a useful resource for family members of veterans with PTSD. However, VA-CRAFT does not enhance veteran treatment initiation. It may benefit from enhancements to increase effectiveness and caregiver engagement.

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Perspectives on decision making amongst older people with end‐stage renal disease and caregivers in Singapore: A qualitative study

Background: End‐stage renal disease (ESRD) is increasing both globally and in Asia. Singapore has the fifth highest incidence of ESRD worldwide, a trend that is predicted to rise. Older patients with ESRD are faced with a choice of haemodialysis, peritoneal dialysis or conservative management, all of which have their risks and benefits. Objective: This study seeks to explore perspectives on decision making amongst older (≥70) Singaporean ESRD patients and their caregivers to undergo (or not to undergo) dialysis. Design: Qualitative study design using semi‐structured interviews. Setting and participants: Twenty‐three participants were recruited from the largest tertiary hospital in Singapore: seven peritoneal dialysis patients, five haemodialysis patients, four patients on conservative management and seven caregivers. Results: While some patients believed that they had made an independent treatment decision, others reported feeling like they had no choice in the matter or that they were strongly persuaded by their doctors and/or family members to undergo dialysis. Patients reported decision‐making factors including loss of autonomy in daily life, financial burden (on themselves or on their families), caregiving burden, alternative medicine, symptoms and disease progression. Caregivers also reported concerns about financial and caregiving burden. Discussion and conclusion: This study has identified several factors that should be considered in the design and implementation of decision aids to help older ESRD patients in Singapore make informed treatment decisions, including patients' and caregivers' decision‐making factors as well as the relational dynamics between patients, caregivers and doctors. 

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Parkinson's Symptoms and Caregiver Burden and Mental Health: A Cross-Cultural Mediational Model

Informal caregivers are critical in the care of individuals with Parkinson's disease (PD) and spend substantial time providing care, which may be associated with negative caregiver outcomes such as burden and mental health issues. Although research in the United States and Europe has generally supported these relations, there is very limited research on PD caregiving in Latin America. The current study examined the following connections in a sample of PD caregivers from the United States (N=105) and Mexico (N=148): (a) PD-related impairments (motor and nonmotor symptoms) and caregiver burden, (b) caregiver burden and caregiver mental health, and (c) PD-related impairments and mental health through caregiver burden. Study results uncovered significant relations among PD-related impairments, caregiver burden, and caregiver mental health. Further, caregiver burden fully mediated the relation between PD-related impairments and caregiver mental health at both study sites. Findings highlight a number of important intervention targets for caregivers and families, including caregiver burden and mental health.

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Occupational therapy for people with dementia and their family carers provided at home: a systematic review and meta-analysis

Objective: To determine the effect of occupational therapy provided at home on activities of daily living, behavioural and psychological symptoms of dementia (BPSD) and quality of life (QOL) for people with dementia, and the effect on family carer burden, depression and QOL.; Design: Systematic review and meta-analysis.; Methods: Eight databases were searched to February 2018. Randomised controlled trials of occupational therapy delivered at home for people with dementia and their family carers that measured ADL, and/or BPSD were included. Two independent reviewers determined eligibility, risk of bias and extracted data.; Results: Fifteen trials were included (n=2063). Occupational therapy comprised multiple components (median=8 sessions). Compared with usual care or attention control occupational therapy resulted in improvements in the following outcomes for people with dementia: overall ADL after intervention (standardised means difference (SMD) 0.61, 95% CI 0.16 to 1.05); instrumental ADL alone (SMD 0.22, 95% CI 0.07 to 0.37; moderate quality); number of behavioural and psychological symptoms (SMD -0.32, 95% CI -0.57 to -0.08; moderate quality); and QOL (SMD 0.76, 95% CI 0.28 to 1.24) after the intervention and at follow-up (SMD 1.07, 95% CI 0.58 to 1.55). Carers reported less hours assisting the person with dementia (SMD -0.33, 95% CI -0.58 to -0.07); had less distress with behaviours (SMD -0.23, 95% CI -0.42 to -0.05; moderate quality) and improved QOL (SMD 0.99, 95% CI 0.66 to 1.33; moderate quality). Two studies compared occupational therapy with a comparison intervention and found no statistically significant results. GRADE ratings indicated evidence was very low to moderate quality.; Conclusions: Findings suggest that occupational therapy provided at home may improve a range of important outcomes for people with dementia and their family carers. Health professionals could consider referring them for occupational therapy.; Prospero Registration Number: CRD42011001166.

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The Modified Caregiver Strain Index: Portuguese version

The Modified Caregiver Strain Index is a widely used tool to screen for caregiver strain in family caregivers. This study presents the Portuguese version of the Modified Caregiver Strain Index and explores its psychometric properties in a sample of 347 informal caregivers of older dependent individuals. Factor analysis revealed a two-factor structure and indicated satisfactory internal consistency. Criterion-related validity was supported by positive significant correlations with the emotional health of the caregiver (psychological distress). The findings show evidence of reliability and validity of the Portuguese version of the Modified Caregiver Strain Index encouraging its use in clinical and research fields.

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A mixed methods inquiry of caregivers of U.S. veterans with sustained "invisible" injuries from Iraq/Afghanistan

An exploratory study of caregiver burden associated with family caregivers enrolled in the VA Caregiver Support Program who assist veterans with serious invisible injuries sustained post September 11, 2001. A mixed methods analysis was completed with a retroactive chart review of already collected data (172 participants) in addition to a phenomenological query of 16 participants. Results: T-tests resulted in a significantly higher caregiver burden score with caregivers who had children in the home (M = 6.84; SD = 3.21) versus those who did not (M = 5.57; SD = 2.75), t (160) = −2.36, p =.02. An ANOVA across caregiver role (parent, spouse, significant other and other) and the Zarit Burden Inventory (ZBI) resulted in a significant difference (F [3, 159] = 1.59, p <.01, with spousal caregivers having a significantly higher ZBI score (M = 6.83; SD = 3.10) than parental caregivers (M = 4.46; SD = 2.70). The phenomenological research resulted in 22 major themes (family adjustment, subjective demands, coping techniques, social support, VA/DOD, self-care, intimacy, role strain, financial resources, life course, obligation, rewards, isolation/loss of self, reciprocity, stigma, community resources, spiritual support, tools, hope, uncertainty, guilt, leash syndrome) which supported quantitative findings. Conclusions: Caregivers and their families had a difficult time adjusting post injury. Caregivers relied heavily on their own coping mechanisms to adapt to their new role and did not find social support to be helpful with caregiving. Spousal caregivers and caregivers with children in the home had more difficulty adjusting when compared with parental caregivers. 

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Male and Female Partner-Caregivers' Burden: Does It Get Worse Over Time?

Background and Objectives The general view is that partner-caregiver burden increases over time but findings are inconsistent. Moreover, the pathways underlying caregiver burden may differ between men and women. This study examines to what degree and why partner-caregiver burden changes over time. It adopts Pearlin's Caregiver Stress Process Model, as it is expected that higher primary and secondary stressors will increase burden and larger amounts of resources will lower burden. Yet, the impact of stressors and resources may change over time. The wear-and-tear model predicts an increase of burden due to a stronger impact of stressors and lower impact of resources over time. Alternatively, the adaptation model predicts a decrease of burden due to a lower impact of stressors and higher impact of resources over time. Research Design and Methods We used 2 observations with a 1-year interval of 279 male and 443 female partner-caregivers, derived from the Netherlands Older Persons and Informal Caregivers Survey Minimum Data Set. We applied multilevel regression analysis, stratified by gender. Results Adjusted for all predictors, caregiver burden increased over time for both men and women. For female caregivers, the impact of poor spousal health on burden increased and the impact of fulfillment decreased over time. Among male caregivers, the impact of predictors did not change over time. Discussion and Implications The increase of burden over time supports the wear-and-tear model, in particular for women. This study highlights the need for gender-specific interventions that are focused on enabling older partners to be better prepared for long-term partner-care. 

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Living with someone with an eating disorder: factors affecting the caregivers' burden

We focused on carers of subjects suffering from eating disorders (ED), and studied the characteristics that mostly expose them to high levels of stress, anxiety, depression and expressed emotion, favoring the accommodation of the family system to the cared person. We administered the accommodation and enabling scale for eating disorders (AESED) questionnaire, the family questionnaire (FQ) and the depression, anxiety and stress scale (DASS-21) questionnaire to 97 carers of 62 ED patients, and investigated the carer's characteristics associated with the scores in the three questionnaires. A personal history of ED, being the primary carer, and caring for a person with a diagnosis of anorexia nervosa are the characteristics that contribute most to aggravate the carers' burden in terms of stress, anxiety, depression, accommodation and enabling. Our findings may help doctors to provide effective support to caregivers and eventually improve the treatment of subjects with ED.

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Informal caregivers in Chile: the equity dimension of an invisible burden

Population aging is driving a process of increase in long-term care needs in Chile and many countries around the world. In this context, this article asks about the consequences of this increase in informal caregivers, emphasizing the inequity issues arising from these changes. Using the CASEN 2017 survey, caregivers are identified and matched to people with long-term care needs. Results show that most caregivers are women, and a large fraction of them are also elderly; this is similar to what has been found previously in developed countries. Caregivers have fewer opportunities than non-caregivers, which translates into lower income-generating ability and higher poverty. The nature of these tasks creates a vicious cycle in which people get trapped with increasing needs and fewer resources to meet them. Important differences arise between caregivers and the rest of the population. Even more concerning is that these disparities are avoidable to some extent, adding an equity dimension to the problem. This emphasizes the need for the generation of policies that will support caregivers and meet their needs.

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Informal care. European situation and approximation of a reality

Introduction: In European countries, the increasing of dependency affects individual, family-level and political aspects. The purpose is to analyse the effects on the health of informal carers living with a dependent person and the number of hours taken up by this care. Results between genders will be compared with other situations (time, energy commitments, influential socio-economic factors and differences among countries).; Materials/methods: This research is a cross-sectional study analysing secondary data and is carried out as part of the European Social Survey (ESS), 2014/2015. A total of 32,992 participants aged over 25 years took part in the ESS. Using an empirical framework, we have selected a simple logit model (logit) and a logit model with a multilevel structure ranking by country of residence (Xtmelogit).; Results: Being a carer is associated with a decrease in health indicators. Moreover, being a woman is related to an intense load of hours of care, no level of studies and living with difficulties. Living in southern or eastern European countries can also be considered a risk factor for carers. There are also important north-south political differences.; Political Implications: These results show the need to apply gender policies to reconcile and regulate the distribution of the income of economically more vulnerable families, as well as the provision of social services to help dependents.

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Impact of working situation on mental and physical health for informal caregivers of older people with Alzheimer's disease in Italy. Results from the UP-TECH longitudinal study

Objectives: This longitudinal study explores whether the working situation (no change in working hours despite care, reduction of working hours due to care or not working) moderates mental and physical health of informal caregivers of older people with Alzheimer's disease (AD) in Italy. Methods: Data from a sample of 146 caregivers of older people with moderate AD involved in the UP-TECH trial across three waves were analysed. Multivariate analyses were used to study the association between independent variables (caregivers' work situation) and dependent variables (caregivers' psycho-physical health). In a second model, elements relating to the caregiver, the cared-for individual and the caregiving situation were added as controls. Results: Being forced to reduce working hours due to care tasks or not being employed independently from care was negatively associated with informal caregiver's physical health, compared with working carers not experiencing reduction of working hours. In the extended model, this result was confirmed. In comparison with working carers not forced to reduce working hours, non-working carers experienced higher levels of caregiver burden and depression, however these results were not confirmed in the adjusted model. Other factors also emerged as important including weekly hours of care, the cared-for older individual's ADL/IADL scores and informal support network. Conclusions: Given the positive effect of labour force participation on health of informal caregivers of older people with AD, policy makers should promote their employment avoiding their forced reduction of working hours, while also putting measures in place to decrease the intensity of informal care provision.

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Financial Strain, Employment, and Role Captivity and Overload Over Time Among Dementia Family Caregivers

Background and Objectives This study examined how financial strain and changes in employment status affect subjective stressors over 12 months in 184 family caregivers of individuals with dementia. Research Design and Methods Subjective stressors of role overload and role captivity, and employment status were measured at baseline, 6-, and 12-months. Self-reports on financial strain were measured at baseline only. Caregivers were categorized into 3 groups based on changes in their employment status during the study over 12 months: (a) who were never employed, (b) who experienced some sort of employment status change, either going from employment to unemployment or vice versa, and (c) who were always employed. Growth curve analyses were conducted to examine within-person changes in role overload and role captivity, and associations with employment and financial strain. Results Caregivers with greater financial strain at baseline had higher levels of role overload and increasing role captivity over time. Caregivers who experienced a caregiving transition and had low financial strain at baseline showed greater decrease in role captivity over 12 months. Although caregivers who were consistently unemployed reported lower levels of role overload, they also showed steeper increase over time than those who were consistently employed. Discussion and Implications Caregivers' perceptions of financial strain add to the long-term stress of the caregiving role. Changes in caregivers' employment status may have complex associations with their feelings of stress over time. 

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Family carers' perspectives of managing activities of daily living and use of mHealth applications in dementia care: A qualitative study

Aim: To examine the needs, barriers and challenges experienced by family carers of people with dementia concerning the management of their care recipients' functional disabilities, and their experiences and opinions of using mobile health (mHealth) applications in health information seeking.; Background: Functional disability is a significant problem among people with dementia and management can be challenging for family carers. Evidence suggests that mHealth applications can support knowledge needs of patients and families.; Design: A qualitative descriptive exploratory study.; Methodology: In-depth interviews were conducted with a purposive sample of family carers using a semi-structured interview guide. An inductive thematic analysis method was used. The COREQ reporting guideline was followed.; Results: Five spousal and five child carers participated in this study. Four key themes were identified: (a) Challenges faced that contribute to psychological distress and burden; (b) Essential role of support systems in dementia care; (c) Information and educational needs of family carers, and (d) Experiences and attitudes of mHealth applications as an educational and supportive resource.; Conclusion: Providing functional care is demanding, challenging and stressful, and leads to carer burden. The complexity of dementia is a barrier in the organisation of functional care and access to a support network is vital to care provision. The information needs of family carers can potentially be addressed through an mHealth application.; Relevance To Clinical Practice: This study provides important information on family carers' needs, and the barriers and challenges related to functional care for people with dementia. Findings from this study can assist nurses and other health professionals in the planning of educational and supportive programs for family carers. Furthermore, the use of mHealth applications could positively contribute to the delivery of these programs.

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An exploration of care‐burden experienced by older caregivers of adults with intellectual disabilities in Ireland

Accessible summary: ·Older family carers of an adult with an Intellectual disability were asked about how they sometimes feel when supporting another person.·Most carers felt a little stressed or strained.·Older carers felt less stressed than younger carers.·The value of supports that help carers was identified.

Background: People with intellectual disabilities are experiencing increased longevity, and in parallel, their family caregivers are also ageing. The literature identifies that these caregivers are at risk of burden. The aim of this study was to measure the level of caregiver burden among older carers of adults with intellectual disabilities in an Irish sample and to analyse the effect of socio‐demographic factors upon experiences of caregiver burden. Materials and Methods: Thirty caregivers completed a survey questionnaire. Data were collected based upon participants' self‐reports of burden using the Zarit Burden Interview (ZBI) and a socio‐demographic questionnaire. Data were analysed using SPSS version 24. Results: Over 57% of carers indicated a mild‐to‐moderate level of burden. Analysis indicated that younger caregivers experience significantly higher levels of burden, when compared to older caregivers. Conclusions: This study contributes to our understanding of burden among an Irish population of older caregivers supporting an adult with an intellectual disability. It identified that carers do experience burden. The importance of proactive assessments and supports for these caregivers was revealed. This study highlights a lack of Irish research in this area and may pave the way for future research which could build upon its findings.

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Experiencing the care of a family member with Crohn's disease: a qualitative study

Objectives: To explore the experiences of caregivers living with relatives affected by Crohn's disease (CD) in a context in which the family provides social support.; Design: A qualitative study based on a phenomenological approach was conducted through in-depth interviews.; Setting: Participants living in Alicante (Spain) were recruited Participants: Eleven family caregivers of people with CD were interviewed.; Methods: The in-depth interviews took place in the participants' homes and were audio recorded and then transcribed for a qualitative thematic analysis.; Results: Five themes and accompanying subthemes were identified: (1) adaptation to the caring experience, (2) dichotomy 'with or without me', (3) unending burden, (4) need for knowledge and control of the disease, and (5) getting used to CD and normalising life.; Conclusion: The findings contribute to an increase in the knowledge and comprehension of the experience of being the caregiver of a relative with CD, which could be useful for professionals towards improving the quality of the CD caring process. Due to the temporal dimension of CD with frequent bouts of exacerbation and remission, family caregivers must adapt and acquire skills during chronic illness evolution. Moreover, the lack of family caregivers' inclusion and follow-up within the Spanish health system makes them feel invisible and useless, which may contribute to caregivers' burdens.

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Effectiveness of an in-home respite care program to support informal dementia caregivers: A comparative study

Objectives: Dementia is a major public health problem with important physical, psychosocial, emotional, and financial consequences for patients, their caregivers, and society. Since patients prefer to be managed at home, extensive research has been conducted into effectiveness of psychosocial interventions to support informal caregivers. The aim of this study was to assess the effectiveness of an in-home respite care program. Methods: In a prospective quasi-experimental study, 99 dyads who received an in-home respite care program were compared at 6 months post-baseline, with 99 matched dyads receiving standard dementia care. Additionally, the short-term effect of the program was evaluated 14 to 15 days post-intervention. The primary outcome was caregiver burden. The secondary outcomes were: desire to institutionalize the patient, caregiver quality of life, and frequency and impact of behavioral problems. Mixed model analyses were performed to evaluate the impact of the intervention. Results: After 6 months, no significant difference on caregiver burden was observed, but intervention group caregivers had a significant lower desire to institutionalize the patient compared with control group caregivers (adj.diff = -0.51; p = .02). Shortly after the program, intervention group caregivers also had a significant lower role strain (adj.diff = 0.75; p = .05), and a lower burden on social and family life (adj.diff = 0.55; p = .05) compared with baseline. Conclusions: This study was the first comparative study to investigate effectiveness of an in-home respite care program to support informal caregivers of persons with dementia. The results partly confirm earlier positive findings from explorative studies. 

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The effect of psychosocial support on caregivers' perceived criticism and emotional over-involvement of persons with dementia: an assessor-blinded randomized controlled trial

Background: Many relatives of close family members suffering from dementia have taken on the caregiver role. While intervention studies have revealed promising results on caregiver burden, distress, and depression, there is a lack of knowledge about how caregivers' perceived relationship with their ill family member influences the burden of care. This study examined whether a psychosocial intervention influenced this perceived relationship from the caregivers' perspective. We also explored whether the caregivers' perception of the care receiver's attitude and behavior changed over time, and whether caregiver stress and mood differed following the intervention.; Methods: The participating caregivers and care receivers were randomly assigned to a psychosocial intervention comprising education about dementia, counselling and group sessions, or to treatment as usual. The study investigated caregivers' experience of expressed emotion using the Felt Expressed Emotion Rating Scale (FEERS), a self-report questionnaire that captures caregivers' perception of criticism (CC) and emotional over-involvement (EOI) exhibited by the family members with dementia.; Results: A total of 208 dyads were enrolled in the study. There were no significant differences between the intervention and control groups in the studied variables. Caregivers' perception of CC and EOI was low but fluctuated somewhat, whereas their mood and stress level were stable during the follow-up period.; Conclusions: According to the FEERS, the intervention did not influence caregivers' perception of CC and EOI, and there was no difference between the intervention and control groups regarding caregivers' perceived relationship. Despite the increased symptoms of dementia, caregivers' level of distress and mood remained stable, and they seemed to maintain a positive perception of the quality of their relationship with the care receiver.; Trial Registration: Clinical.Trials.gov Sept. 2009, NCT01287767.

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The Effect of California's Paid Family Leave Program on Employment Among Middle-Aged Female Caregivers

Background and Objectives This study examined the effect of a Paid Family Leave program in California (CA-PFL) on employment among middle-aged female caregivers. We also examined differences in the relationship between the availability of paid family leave (PFL) and employment in socioeconomic subgroups of midlife women. Research Design and Methods Data came from multiple years (2000‒2014) of the Current Population Survey (CPS) (N = 68,773 individuals). Applying a Difference in Differences (DiD) approach to removing potential selection biases related to program participation, we used a logistic regression to estimate the effects of PFL. Results There was a significant increase in the likelihood of working based on CA-PFL. This positive effect, however, was found only among the early middle-aged, the near-poor, and those had the highest level of education. Discussion and Implications Among the late middle-aged, caregiving burden may not affect decisions on whether to exit the labor market, and PFL may not significantly mitigate the well-known negative effects of intense and multiple caregiving roles (parents, spouse, and/or children with disabilities). Future studies should examine PFL effects and their correlates such as age-cohorts, caregiving intensity, and retirement patterns. The unexpected null findings of CA-PFL's effect on employment outcomes for the poor and those with low education levels suggests these vulnerable groups might not be able to fully benefit from the originally intended goal of the policy, instead being left more vulnerable compared to the near poor. Such a possibility increases the importance of focused research and policymaking attention for this group.

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Determining the caregivers' burden in caregivers of patients with mental illness

Objective: To examine the factors associated with caregivers' burden in individuals providing care to family members suffering from serious mental illness. Methods: This Cross Sectional Study was carried out at Armed Forces Institute of Mental Health, Rawalpindi, from May 2015 to December 2015. A purposive sample of 120 family caregivers (60 males and 60 females, age range= 18-65) who were taking care of patients with serious mental illness (i.e. Major Depressive Disorder, Bipolar Disorder & Schizophrenia) for at least one year were recruited from the hospital and assessed through Zarit Burden Interview (ZBI) and Brief COPE inventory. The decline in functional status, and diminished physical capacity compromising the independent living of the care recipient was assessed through Katz Index of Independence in Activities of daily living (ADL) and Lawton Instrumental activities of daily living (IADL). Results: The results suggest that the longer the duration of illness (F=25.71, p < 0.01), with increased impairments of care-recipients, (decline in functional status, F=21.33, p < 0.001; diminished physical capacity F =32.41, p < 0.001) the more the burden experienced by the caregivers. Moreover, caregivers who were married (t=-2.98, p < 0.01), less educated (t =5.48, p < 0.01), lived in rural area (t = -7.99, p < 0.01), had lower monthly income (t = -4.95, p < 0.01) provide longer hours of caregiving (F=19.12, p < 0.001) and used avoidant coping behavior (F= 56.37, p < 0.001) reported significantly higher caregiver burden than caregivers who were unmarried, more educated, lived in urban area and had better income. Conclusion: The results of study demonstrate that caring for family members with serious mental illness impacts the caregivers' wellbeing. It, therefore, highlights the need for support and counseling services for the caregivers to reduce the burden of caring. 

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Determinants of Burden and Satisfaction in Informal Caregivers: Two Sides of the Same Coin? The CUIDAR-SE Study

The aim of this study conducted in Spain was to analyze and compare burden, severe burden, and satisfaction among informal caregivers in relation to health-related quality of life (HRQoL), type and duration of caregiving, perceived social support, and use of social and health care services. We performed multivariate analyses to identify variables associated with caregiver burden, severe burden, and satisfaction with caregiving, stratified by gender. The results showed that secondary or third-level education, performance of ungratifying tasks, negative coping with caregiving, and more years providing care were associated with greater burden. Variables with protective effect were better perceived health of the person being cared for, better caregiver HRQoL, and high perceived social support. Women were 75% more likely to experience severe burden compared with male caregivers. Burden was reduced by high perceived social support in the case of women and by high caregiver HRQoL in the case of men. The main determinant of caregiving satisfaction for both men and women was perceived social support (OR = 3.11 and OR = 6.64). This study shows the need for interventions that promote gender equality and social support as a means of relieving burden and severe burden and improving satisfaction in both male and female caregivers.

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Delirium Burden in Patients and Family Caregivers: Development and Testing of New Instruments

Background and Objectives Delirium creates distinct emotional distress in patients and family caregivers, yet there are limited tools to assess the experience. Our objective was to develop separate patient and family caregiver delirium burden instruments and to test their content and construct validity. Research Design and Methods Two hundred forty-seven patients and 213 family caregivers were selected from an ongoing prospective cohort of medical-surgical admissions aged ≥70 years old. New patient and family caregiver delirium burden instruments were developed and used to measure the subjective experiences of in-hospital delirium. Delirium and delirium severity were measured by the Confusion Assessment Method (CAM) and CAM-Severity (long form). Results Both Delirium Burden (DEL-B) instruments consist of eight questions and are measured on a 0 – 40 point scale. Final questions had good clarity and relevancy, as rated by the expert panel, and good internal consistency (Cronbach's α =.82–.86). In the cohort validation, Patient DEL-B (DEL-B-P) was 5.1 points higher and Family Caregiver DEL-B (DEL-B-C) was 5.8 points higher, on average, for patients who developed delirium compared to those who did not (p <.001). Test–retest reliability of DEL-B-C at baseline and 1 month was strong (correlation =.73). Delirium severity was mildly-moderately correlated with DEL-B-P (correlation =.34) and DEL-B-C (correlation =.26), suggesting contribution of other factors. Discussion and Implications We created instruments to reliably measure and evaluate the burden of delirium for patients and their family caregivers. Although additional validation is indicated, these instruments provide a key first step toward measuring and improving the subjective experience of delirium for patients and their families. 

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Caring ability, burden, stress and coping of family caregivers of people in cancer treatment

Objective: To analyze the association between the caring ability and the burden, stress and coping of family caregivers of people in cancer treatment. Method: A crosssectional study with 132 family caregivers. The following instruments were applied: a characterization instrument, the Caring Ability Inventory, the Zarit Burden Interview, the Perceived Stress Scale, and the Brief COPE. The Spearman Correlation was used with significance <5%. Results: There were significant and positive correlations between total caring ability and: burden - interpersonal relationship (p=0.03); stress (p=0.02) and maladaptive coping (p=0.00); and inversely proportional correlations with problem-focused coping (p=0.03). The courage had inversely proportional correlation with: self-efficacy (p=0.03), interpersonal relationship (p=0.00), stress (p=0.04) and maladaptive coping (p=0.00). The knowledge had significant and positive correlation with problem-focused coping (p=0.00), adaptive coping (p=0.01), and inverse correlation with stress (p=0.02). Conclusion: The level of caring ability correlates with levels of stress and burden, and with the type of coping strategy used by family caregivers.

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Caregivers of hip fracture patients: The forgotten victims?

Introduction: The burden that family and friends assume when caring for hip fracture patients can negatively impact the caregiver's quality of life, relationships, and the decision to place the patient in a care facility. The purpose of this study was to evaluate the burden of caregiving for intertrochanteric hip fractures to better counsel patients and caregivers in order to prevent delayed admission to a care facility. Methods: A retrospective analysis of a prospectively gathered elderly hip fracture database identified 29 patients and their caregivers with complete 6 month follow-up. Caregiver burden and depression scales were administered to the primary caregiver in the immediate perioperative period (baseline), at 3 month follow-up, and at 6 month follow-up. At each time point caregivers reported the effects of caregiving on their finances, work hours, relationships, and their willingness to admit the patient to a long-term care facility. Results: At 6 month follow-up, <30% of caregivers reported negative effects on their finances, relationships, work hours, or intent to place the patient in care facility, while 77% endorsed cherishing their time spent as a caregiver. The number of caregivers with a high caregiver burden remained stable at 20% over the 6 month follow-up; these caregivers were more likely to have a depressed mood (p < 0.01), to consider placement of the patient into a long-term care facility (p < 0.01), and to have negatively affected finances (p = 0.03) and relationships (p < 0.01). Conclusions: High degrees of burden were experienced by 20% of caregivers of hip fracture patients. Caregivers with high caregiver burdens were more likely to consider placement of the patient into a long-term care facility. Risk factors for high caregiver burdens should be identified to optimize the quality of caregiving after discharge and to prevent delayed admission to a long-term care facility. Level Of Evidence: Level IV, case series.

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Caregiver burden and stress in psychiatric hospital admission

Objective: to evaluate the relation between sociodemographics factors, stress and burden of care of family caregivers of patients at a psychiatric hospital admission.; Method: quantitative study, with a cross-sectional correlation design. A total of 112 family caregivers participated, older than 18, in a Brazilian psychiatric hospital. A sociodemographic questionnaire was used to collect data, the Zarit Burden Interview and LIPP Adult Stress Symptom Inventory.; Results: burden of care in family caregivers at a psychiatric hospital admission was significantly associated with stress (p=0.000). The psychological symptoms of stress predicted severe burden. Most caregivers presented a moderate or severe burden, with 52.7% in the resistance phase of stress; 66.1% presented psychological symptoms.; Conclusion: results show the alarming situation of caregivers of patients from a psychiatric hospital, evidencing their own vulnerability to illness. Indeed, the during admission in a psychiatric hospital, not only patients need care, but also their caregivers.

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Burden of Illness in Not Adequately Controlled Chronic Hypoparathyroidism: Findings From a 13-Country Patient and Caregiver Survey

Objective: To address knowledge gaps regarding burdens associated with not adequately controlled chronic hypoparathyroidism.; Design: Global patient and caregiver survey.; Study Populations: Patients with chronic hypoparathyroidism not adequately controlled on conventional therapy and their caregivers.; Measurements: Health-related quality of life (HRQoL) and health status were evaluated using the 36-item Short Form version 2 (SF-36 v2.0) and Five-Level EuroQoL 5 Dimensions (EQ-5D-5L) instruments, respectively. Hypoparathyroidism-associated symptoms were assessed by a disease-specific Hypoparathyroidism Symptom Diary and caregiver burden via the Modified Caregiver Strain Index (MCSI).; Results: Data were obtained from 398 patients and 207 caregivers. Patients' self-rated hypoparathyroidism-related symptom severity was none (3%), mild (32%), moderate (53%), or severe (12%). Per the Hypoparathyroidism Symptom Diary, patients reported moderate, severe, or very severe symptoms of physical fatigue (73%), muscle cramps (55%), heaviness in limbs (55%), and tingling (51%) over a 7-day recall period. Impacts (rated "somewhat" or "very much") were reported by 84% of patients for ability to exercise, 78% for sleep, 75% for ability to work, and 63% for family relationships. Inverse relationships were observed between patient self-rated overall symptom severity and HRQoL and health status assessment scores-the greater the symptom severity, the lower the SF-36 and EQ-5D-5L scores. Caregiver burden increased with patient self-rated symptom severity: none, 1.7 MCSI; mild, 5.4 MCSI; moderate, 9.5 MCSI; severe, 12.5 MCSI.; Conclusion: Patients with not adequately controlled hypoparathyroidism reported substantial symptoms and impacts. Greater patient symptom severity was associated with decreased patient HRQoL and health status assessments and increased caregiver burden.

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Burden of Care and Quality of Life in Home Caregivers of Patients With Stroke in Iran

The purpose of this study was to investigate the relationship between Burden of Care and Quality of Life in informal home caregivers of stroke patients in Iran. Also we were trying to explore the factors that affect the burden of care. In this cross-sectional study, we have selected 62 informal home caregivers of the patients admitted to "the stroke outpatient unit of the neurology clinic" of the central hospital in Semnan province, Iran, to take part in the investigation. We interviewed them using the Caregiver Burden Inventory and SF-36 Questionnaire for assessing their quality of life. There was a negative and significant correlation between different aspects of quality of life and burden of care. In the bivariate regression model, being married and having lower levels of education (minimum years of schooling) were associated with higher levels of the burden. Our study shows that increasing burden of care in informal home caregivers reduces the quality of life in all domains. Thus, the results of this study indicate that an increase in the burden of caregiving on caregivers lowers their quality of life in all aspects; especially, caregivers who provide care to their spouses encountered more burden. Therefore, these caregivers must be in the center of interest while planning to reduce the burden of care.

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Burden in caregivers of adults with epilepsy in Asian families

Purpose: The literature on caregiver burden tends to focus on children and teenagers with epilepsy and less on adults. As caregiving is a dynamic, complex process across the trajectories, this study aims to examine the factors associated with caregiving burden in those caring for adults with epilepsy.; Method: This is a cross-sectional, survey-based study in which participants responded to questionnaires regarding perceived burden (ZBI), quality of life (IEQoL), psychological distress (DASS-21), family functioning (FAD) and perceived social support (MSPSS). Additional measures include socio-demographics and clinical characteristics of the care-recipient.; Results: A total of 111 caregivers participated, of whom 72.1% were females, 55% parents, 59.5% Chinese, 51.4% unemployed and 46.0% with tertiary education. Approximately half (42.3%) reported mild-to-moderate levels of burden (mean ZBI score 29.93, SD 16.09). Furthermore, multiple regression analysis identified10 predictors of caregiver burden, namely family functioning, weekly caregiving hours, number of caregivers per family, attitude towards epilepsy, family support, caregivers' gender, personal income and as well as care-recipients' age of onset, seizure frequency and ADL dependency (F(10, 85) = 11.37, p < 0.001). Stepwise regression highlighted family functioning as the main predictor (β = 0.299, p < 0.001). The total ZBI score was positively correlated with caregivers' reported levels of depression (r = 0.549, p < 0.001), anxiety (r = 0.599, p < 0.001) and stress (r = 0.576, p < 0.001) subscales in DASS-21, and negatively correlated with IEQoL (r=-0.637, p < 0.001).; Conclusion: This study shows that caregivers' burden is highly associated with the family system (family functioning, support and number of caregivers), besides demographics, psychosocial and clinical characteristics. Future research is required to learn how to support this sub-group of caregivers within the family system.

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Antonovsky's sense of coherence and resistance resources reduce perception of burden in family carers of people with Alzheimer's disease

Objectives: Taking care of people with dementia (PWD) has been associated with some degree of burden. The variability of the carer's burden can be partially explained by their personal characteristics. Antonovsky's model of health defined the resistance resources (RRs) as essential mechanisms to cope with stressors, and to shape the personal sense of coherence (SOC). This study identifies the RRs related with carer's SOC, and their implications in the perception of burden in family dementia carers. Methods: A sample of 308 participants from the 'SOC & DEM study' (154 carers and 154 PWD) was recruited from two memory clinics. Carer's personal characteristics of burden, SOC, self-efficacy, coping strategies, perceived social support, and depression were evaluated using standardized instruments. PWD's degree of dependence and behaviour and psychological symptoms of dementia (BPSD) were assessed too. A path analysis was used to test the relationship between caregiver burden and SOC including the personal RRs of the carers and clinical data of PWD. Results: The path model identified SOC as a major factor related to carer's burden perception (r = -.327). Self-efficacy (r = .285), two coping strategies, 'use instrumental support' (r = -.235) and 'behavioural disengagement' (r = -.219), and social support perceived (r = .304) were the main carer's personal characteristics directly related with SOC. Caring experience (r = -.281) was the main carer factor related with burden while dependence (r = .156) and BPSD (r = .157) were the dementia factors. Conclusion: The SOC has previously related with carer's burden. The results contributed to identify relevant and modifiable personal characteristics as RRs that could reduce this burden.

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Predictors of the personal benefits and positive aspects of informal caregiving

Objective: We investigated a) the number of reported benefits in an informal caregiving situation and b) the factors that predict the caregiver's (CG's) experience of benefits. Method: In this cross-sectional study, we computed univariate analyses and a multiple regression analysis using a benefit score as the dependent variable. Participants were 734 informal CGs who provide care for a person with chronic care needs in Germany. We examined the CG's self-reported physical complaints (GBB-24), subjective burden (CSI), depressive symptoms (PHQ-9), quality of life (CarerQoL), and benefits (BIZA-D). Results: Most of the CGs (87.1%) experienced benefits in at least one field. A higher experience of benefits was significantly associated with: more depressive symptoms (r = 0.10), higher burden (r = 0.17), longer duration of care (r = 0.07), longer daily care time (r = 0.21), more physical complaints (r = 0.15), and a good quality of the relationship between CG and CR (η = 0.13). In the multivariate regression analysis, a good relationship between the CG and CR (β =.157, P <.001), an increased amount of care time (β =.188, P <.001), and a higher level of burden (β =.167, P <.001) were associated with greater CG's benefits. Conclusion: CG benefits are a very important, often experienced, but less-explored construct in caregiving research. Benefits do not seem to be on the opposite end of the same continuum as negative aspects of caregiving. Benefits appear to be a nearly distinct dimension in informal care settings.

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65 The Health and Well-Being of Family Carers of Older People: An Exploratory Cross-Sectional Analysis

Background Family carers are critical to supporting older people to live well in their homes and demand for care at home is projected to increase dramatically into the future. The Irish state and health system, therefore, are dependent upon the supply of family care now and into the future. The health and well-being of older family carers, and carers providing care to older people in the community, is under-researched. Methods A combination of online and postal survey distribution achieved a convenience sample (N=1102) of carers from the membership and network reach of Ireland's largest family carer support and advocacy agency. Results Of those carers providing care to an older adult (n=341), 30% were aged over 64 and 28% reported mild to moderate carer burden. A further 36% reported moderate to severe burden. The average Zarit burden score for carers caring for an older adult was 44 (CI 42:45) and was 39 (CI 36:43) for family carers aged over 64. Among family carers of older adults, 72% reported diagnosis or treatment for physical illness and 42% reported diagnosis or treatment for mental illness. The most frequently cited source of worry for this group was their own health and wellbeing (73%) followed by lack of appropriate supports/services (68%). GPs were the most frequently cited source of support (64%) followed by a PHN (50%). Conclusion The study findings indicate that the lack of appropriate state supports and services for family carers is negatively impacting carer health and well-being. Family carers, including those providing care to older people and those who are themselves aged over 64, need to be consistently identified for intervention by health professionals, particularly GPs and PHNs. 

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77 Behind the Scenes: the Burden Experienced by Informal Carers of People with Dementia

Background Informal care is undoubtedly a vital to dementia care in Ireland. To date, little research has been carried out exploring the burden experienced by informal carers of people with mild to moderate dementia. The main aim of this quantitative study is to explore the burden experienced by caregivers, relative to dementia severity. The secondary aim is to identify risk factors which may be contributing to this perceived burden. Methods Fifty-two people with dementia(PwD) and their informal caregivers were recruited by convenience sampling, and data was collected as part of the 'CHESS' research trial. Data was collected during baseline assessments between April 2017 and September 2018. Dementia disease severity was measured using the Mini-Mental State Examination(MMSE), the Neuro-Psychiatric Inventory Questionnaire(NPI-Q), and the Disability Assessment for Dementia(DAD) scale. These outcome measures were then compared to levels of caregiver burden, which was measured using the Zarit-Burden Interview(ZBI). These comparisons were completed using Spearman's correlations. Socio-demographic characteristics of both the carer and PwD were then compared to caregiver burden, using Mann-Whitney and Kruskal-Wallis tests. Results The results of the study substantiate that behavioural disturbances(p=0.000) and increasing disability(p=0.022) of the PwD are associated with higher carer burden. The study also identified potential non-modifiable risk factors for increased carer burden. These include spousal relationship to the PwD(p=0.096), older caregiver age(p=0.208), female carer gender(p=0.083) and higher educational attainment of the caregiver(p=0.035). Some of these differ from factors influencing burden in other international populations. Conclusion This preliminary analysis is the first study of its kind to be carried out in Ireland. It sheds light on potential predictors and risk factors for carer burden and shows need for future research to be carried out in this area. Such research would help to clarify interventions which could minimise the prevalence of the burden experienced by informal caregivers.

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Mental health of carers in Wales: a national population survey

Background Informal care is increasingly common in ageing populations. However, the impact of caring responsibilities on carers’ mental health remains unclear. We used data from the HealthWise Wales (HWW) cohort to examine the impact of caregiving on the mental health of carers. Methods HWW collects demographic, lifestyle, and opinion data, which are linked to routine health-care records, from individuals aged 16 years or older who live in Wales, UK (n=21 779). Mental health was assessed by use of the short Mental Health Inventory (MHI-5) and self-reported diagnosis of mental health conditions. Data on diagnosis of common mental disorders (CMD), including depression and anxiety, were obtained from linked health-care records. Level of caring responsibilities and its impact on the individual's work were self-reported. We estimated associations between caring responsibilities and CMD using logistic regression adjusting for gender, age, and deprivation. HWW received ethics approval from Wales Research Ethics Committee (REC) 3 on March 16, 2015 (reference 15/WA/0076). All participants gave informed consent digitally as a pre-requisite for registration online. Findings The cohort included 3682 carers; 2791 (76%) were female, 2833 (77%) were aged 45 years or older, and 1900 (53%) lived in more deprived areas. The cohort of non-carers included 10 023 people; 7107 (71%) were female, 6030 (60%) were aged 45 years or older, and 4814 (49%) lived in more deprived areas. Of those identifying as carers, 1271 (35%) of 3607 with linked health records self-reported a CMD and 1331 (44%) of 3057 with linked health records had a diagnosis of a CMD versus 3029 (31%) and 2992 (36%) of non-carers, respectively. There was 80% agreement between self-report and recorded diagnosis of a CMD in health-care records. Compared with non-carers, carers were 1·3 times more likely to have an MHI5 score indicating current CMD (odds ratio [OR] 1·28, 95% CI 1·17–1·40; p<0·0001). Participants who had previously given up work to provide care were also more likely to have an MHI5 score indicative of a CMD (1·67, 1·47–1·88; p<0·0001). Being a carer was further linked to the likelihood of self-reported diagnosis of a CMD (1·21, 1·11–1·32; p<0·0001) and of diagnosis of a CMD from health-care records (1·32, 1·21–1·44; p<0·0001), even after adjusting for sociodemographic factors. Interpretation This study suggests that caring is linked to poor mental health, emphasising the potential burden of caring responsibilities on the carers’ mental health across the population. While acknowledging the cross-sectional nature of these data, these findings highlight the need to develop and test interventions that can support informal carers to protect their mental health. Funding Health and Care Research Wales.

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Defining the concept of family caregiver burden in patients with schizophrenia: A systematic review protocol

Background: Since the deinstitutionalization policy, in psychiatric hospitals, the care of patients with schizophrenia was left to their families which has been imposing a heavy burden on them. Family caregiver burden could have consequences for caregivers, patients, and the society. There is very little consensus on the definition and dimensions of the caregiver burden, which leads to a lack of consistency in the results of research. Thus, the present study was aimed to redefine the family caregiver burden of patients with schizophrenia. Methods: The databases PubMed, Scopus, Web of Science, MEDLINE (Via Ovid), ProQuest, SCI, Magiran, SID, and IranDoc will be searched from 1940 to 2018 using subject headings and appropriate terms in both Farsi and English languages. Also, gray literature and the reference list of included articles will be used to offer an appropriate definition of the family caregiver burden in patients with schizophrenia. Two independent reviewers will participate in study selection, data collection, and quality assessment steps. The result will be presented in tabular form, and meta-synthesis will be performed. Discussion: The result of this systematic review will help present the comprehensive definition of the family caregiver burden in patients with schizophrenia according to its evolutionary trend. Systematic review registration: PROSPERO CRD42018099372. 

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A Review of the Complex Role of Family Caregivers as Health Team Members and Second-Order Patients

In Palliative Care, the unit of care is the patient and their family. Although members of the health care team often address the family caregiver's opinions and concerns, the focus of care remains on the needs of the patient. The readiness and willingness of the family caregiver is often overlooked as they are expected to assume a complex caregiving role. When family caregivers are not intellectually or emotionally prepared or physically capable, the caregiver is at high risk for serious health issues and cognitive, emotional, and physical decline particularly as caregiving extends over time. Family caregivers are often a neglected and at-risk population. Illustrated through the use of a case study, this article addresses the complex role of family caregivers, as both health team members and second-order patients. It emphasizes the importance of family assessment and interventions to balance the burdens and benefits of family caregiving and protect caregivers' health and well-being.

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Interventions to support family caregivers of people living with dementia in high, middle and low-income countries in Asia: A scoping review

Introduction Despite increasing numbers of persons living with Alzheimer's disease and Alzheimer's-related dementias (AD/ADRD) in Asia, particularly in low-income countries (LIC) and middle-income countries (MIC), surprisingly little is known about the current state of the evidence for family caregiver interventions. The objectives of this scoping review were to: (1) describe the evidence for efficacy of family dementia-caregiver psychosocial interventions in Asian countries, (2) compare evidence across LIC, MIC, and high-income countries (HIC), and (3) characterise cultural adaptions to interventions developed outside Asia. Methods The inclusion criteria included: (1) conducted in Asia (2) included an intervention delivered to a family caregiver of a person living with AD/ADRD, (3) reported quantitative outcomes for the family caregiver and (4) published in a peer-reviewed journal with full text available in English. Results Thirty intervention trials were identified meeting inclusion criteria and all reported statistically significant (p<0.05) improvement in one or more caregiver outcomes. Interventions usually included multiple components. The most frequently reported outcomes (ie, by ≥20% of studies) were caregiver depression, burden, quality of life and self-efficacy. Overall, 26 (87%) of the studies were conducted in HIC in Asia, primarily in Hong Kong SAR-China and Taiwan, and only 4 (13%) in LIC and MIC in Asia. Seven studies (23%) used interventions developed in USA and several described cultural adaptations. Conclusion This scoping review found substantial evidence, particularly from high-income Asian countries, that a wide range of interventions improve AD/ADRD family caregiver outcomes. However, critical knowledge gaps exist, particularly for LIC and MIC in Asia, where the number of persons with dementia is numerically largest and projected to increase dramatically in coming decades. The field could also benefit from more detailed descriptions of the process and types of cultural adaptations to interventions. 

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Informal Caregiver Burnout? Development of a Theoretical Framework to Understand the Impact of Caregiving

Informal caregiving is a rewarding but demanding role. The present theoretical framework proposes to adapt the tridimensional concept of burnout to informal caregiving as a way to address the potential consequences of caregiving. This adaptation reflects caregivers' reported difficulties, as well as empirical findings on emotional exhaustion, depersonalization, and personal accomplishment as caregiving outcomes. But to understand burnout in informal caregiving contexts, it is also necessary to find ways to model it. The Informal Caregiving Integrative Model (ICIM) is thus proposed. This model is based on the integration of elements from literature on both informal caregiving stress and professional burnout. The goal of the ICIM is to emphasize the importance of every category of determinants of informal caregiver burnout (i.e., relating to the caregiver, the caregiving setting, and the sociocultural context), with a key mediating role for the caregivers' appraisal of their situation and their relationship with the care-recipient. This article is a first integrative step in the consideration of a form of burnout specific to informal caregivers and supports the design of empirical and interventional studies based on the theoretical foundation that the ICIM proposes.

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Older adult caregivers of their spouses with acquired late-life disability: examining the effectiveness of an internet-based meditation program in mitigating stress and promoting wellbeing

This article reports a study examining the impact of an internet-based meditation program in mitigating stress and promoting wellbeing among older adult caregivers of their spouses with acquired late-life disability in Central Europe and South Asia compared to leisure. Posttest (T2) the meditation cohort exhibited lower caregiver burden and psychological distress, improved responses to care challenges, and greater wellbeing compared to the leisure group. South Asians, women, middle class, college educated, whose spouses had locomotor and sensory disabilities and lived as a couple alone, reported lesser caregiving burden, improved responses to care challenges, lesser distress and greater wellbeing at T2. Meditation lessons attended and self-practice mediated the relationship between demographic predictors and outcomes and self-practice had the largest positive impact. Meditation influenced certain aspects of caregiver wellbeing more such as self-care and certain specific aspects of wellbeing. Internet-based caregiver interventions are evidence as useful for social work with older caregivers.

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Cutoff of the Zarit Burden Interview in predicting depression and anxiety

Background: The purpose of the present study was to determine a statistically valid cutoff score for the Zarit Burden Interview (ZBI) in order to identify family caregivers at risk for depression and anxiety to guide for further assessment and future intervention. Methods: The ZBI, the Patient Health Questionnaire (PHQ), and the Generalized Anxiety Disorder Scale (GAD) were administered to a representative community sample of 327 family caregivers of schizophrenia individuals. A ZBI cutoff score was determined using three different statistical methods: tree-based modeling, K-means clustering technique and linear regression, followed by contingency analysis and receiver operating characteristic (ROC) curve to compare between depression and anxiety scale scores with the ZBI cutoff. Results: Findings suggest that a cutoff score of 48 in ZBI has significant predictive validity for identifying caregivers at risk for both depression and anxiety. A ZBI cutoff of 48 showed sensitivity of 73% for PHQ and 70% for GAD, specificity of 80% for PHQ and 79% for GAD, PPV (positive predictive value) of 75% for PHQ and 73% for GAD, NPV (negative predictive value) of 78% for PHQ and 76% for GAD. Conclusions: This cutoff score would enable health care providers to assess family caregivers at risk and provide necessary interventions to improve their quality of life in this important role. 

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Photojournalism-Based Intervention Reduces Caregiver Burden and Depression in Alzheimer’s Disease Family Caregivers

Purpose: Art interventions have demonstrated holistic benefits for persons living with dementia and their caregivers. In this article, we describe the results of a pilot photojournalism program for 10 unpaid caregivers of persons living with dementia, with respect to caregivers’ experience in the program and their psychological well-being. Design: Caregivers participated in four sessions led by a professional photojournalist who taught principles of photography. Between the sessions, caregivers took photographs that represented what caregiving meant to them using digital cameras provided in the program. During the sessions, instruction was interspersed with discussion of caregivers’ photographs. Method: Caregiver burden and depressive symptoms were measured pre- and postprogram. Qualitative exploration included sessions’ observations, viewing caregivers’ photographs, and recording caregivers’ accompanying comments. Findings: For participants with pre- and postprogram data, caregiver burden decreased significantly (p =.037). For caregivers with pre- and postprogram data, depressive symptoms decreased nonsignificantly (p =.066). Clinically meaningful reductions in caregiver burden and depressive symptoms were attained. Qualitative findings highlighted caregivers’ strong engagement with the project, the facilitator, and other participants, and reflection on multiple aspects of their experience. Conclusions: This intervention helped caregivers creatively communicate their experience and demonstrated efficacy in the improvement of caregivers’ psychological well-being. 

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Informal caregivers of people undergoing haemodialysis: Associations between activities and burden

Background Recent studies indicate that informal caregivers provide support to family members who are undergoing haemodialysis although the amount and type of activities provided and the burden of this is not well‐known. Objectives To analyse the burden and support activities of informal caregivers caring for adults receiving haemodialysis. Methods A cross‐sectional study recruited 178 adult informal caregivers (family members or close friends) of patients who had been undergoing haemodialysis for more than three months. Caregiver burden was measured by the Zarit Caregiver Burden Scale (ZCBS). Difficulty and time‐spent on caring tasks were assessed using the Oberst Caregiver Burden Scale (OCBS). Demographic characteristics were also collected. Results Most informal caregivers were female (55.6%) between 30 and 60 years of age (66%) and were a spouse of the person receiving haemodialysis. Overall, informal caregivers reported a high level of burden in caring (M = 40.15, standard deviation [SD] = 10.46) with 80.9% identifying the level as severe. However, the caring activities were perceived as slightly difficult (M = 24.5, SD = 8.81) and not requiring much time (M = 29.47, SD = 8.75). Predictors of greater informal caregiver burden were having their own health problems, greater time required to provide care, and doing more difficult tasks (R2 = 0.43, p < 0.01). Conclusion While the caregiving activities were not reported to take much time, there was a high level of burden on informal caregivers. Renal nurses are ideally placed to assess for caregiver burden and to provide education and support to them.

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Caring for the informal cancer caregiver

PURPOSE OF REVIEW: Informal cancer caregivers play a vital role in the physical, functional, and emotional well being of cancer patients. However, the majority of informal caregivers are not prepared for their caregiving role. We reviewed and synthesized the recent literature (last 18 months) and focused on research in the following understudied areas: technology-driven interventions for informal caregivers; informal caregivers of older adults with cancer; interrelationship between informal caregiver and dyadic outcomes; and research priorities and guidelines to improve informal caregiver support. RECENT FINDINGS: Studies focused on technology-driven informal caregiver interventions, with evidence of good feasibility and acceptability with benefits for burden and quality of life (QOL). Studies also focused on QOL for caregivers of older adults with cancer. Finally, research priorities and clinical guidelines were established through Delphi survey studies. SUMMARY: Despite the substantial evidence on informal cancer caregiving, more research is needed to further characterize caregivers at high risk for burden, explicate interrelationships between caregiver/patient outcomes, and test innovative and scalable interventions. Studies are also needed to understand the specific needs of informal caregivers in cancer surgery, an understudied treatment population.

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Psychosocial Issues and Bereavement

Patients with serious illness and their family caregivers face numerous ongoing psychological and social concerns and stressors throughout the disease trajectory. Common challenges relate to the need to manage the disease by making complex and often difficult medical decisions. In addition, the presence of psychological and psychiatric distress, including depression and anxiety, may significantly add to the overall symptom burden for the patient and family caregivers. These challenges negatively impact mood, cognitive function, interpersonal relationships, and medical decision making. If not recognized and adequately addressed, they can seriously undermine coping and resilience, eroding psychological well-being and quality of life. 

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Caregiver Interventions for Adults Discharged from the Hospital: Systematic Review and Meta-Analysis

OBJECTIVES: To review the evidence evaluating the effectiveness of informal caregiver interventions to facilitate the recovery of older people discharged from the hospital. DESIGN: Systematic review and meta-analysis. SETTING: Hospital and community. METHODS: Published and unpublished randomized and nonrandomized controlled trials assessing the effectiveness of informal caregiver interventions to support the recovery of older people discharged from the hospital were identified (to March 2019). The primary outcome was patient health-related quality of life (HRQOL). Secondary outcomes included patient function, caregiver burden, caregiver HRQOL, psychological distress, adverse events, and health resource use. Studies were critically appraised and meta-analyzed. PARTICIPANTS: Adults who had been admitted to the hospital. RESULTS: A total of 23 studies were eligible (4695 participants). The indication for hospital admission was stroke in 21 trials (91%). Interventions consisted of training and/or skills-based programs, with or without home visits/telephone follow-up. Caregiver interventions for patients following stroke may provide no benefit for patient HRQOL at 12 months (standardized mean difference =.29; 95% confidence interval = -.12 to.69; low-quality evidence). Caregiver interventions demonstrated benefit for caregiver burden and both patient and caregiver anxiety at 12 months. No consistent effect was found on functional outcomes, depression, HRQOL, adverse events, or health resource use measures. CONCLUSIONS: Informal caregivers who receive training to facilitate the recovery of older people discharged from the hospital following stroke may have a lower burden and reduced anxiety at 12 months compared with those who do not. However, the evidence was moderate to low quality. Further study is warranted to explore whether caregiver interventions can be modified for nonstroke populations such as those with hip fracture. 

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Pre-surgical Caregiver Burden and Anxiety Are Associated with Post-Surgery Cortisol over the Day in Caregivers of Coronary Artery Bypass Graft Surgery Patients

Background: The relationship between pre-surgical distress and diurnal cortisol following surgery has not been investigated prospectively in caregivers of coronary artery bypass graft (CABG) patients before. We aimed to examine the relationship between pre-surgical anxiety and caregiver burden and diurnal cortisol measured 2 months after the surgery in the caregivers of CABG patients. Method: We used a sample of 103 caregivers of elective CABG patients that were assessed 28.86 days before and 60.94 days after patients’ surgery. Anxiety and caregiver burden were assessed using the anxiety subscale of the Hospital Anxiety and Depression Scale and the Oberst Burden Scale respectively. Saliva samples were collected to measure cortisol area under the curve with respect to ground (AUCg) and diurnal cortisol slope. Anxiety and caregiver burden were entered into linear regression models simultaneously. Results: While high levels of pre-surgical anxiety were positively associated with increased follow-up levels of AUCg (β = 0.30, p = 0.001), greater pre-surgery perceived burden score was associated with steeper cortisol slope (β = 0.27, p = 0.017) after controlling for a wide range of covariates. Conclusion: These outcomes support the utility of psychological interventions aimed to increase the awareness of caregiving tasks and demands in informal caregivers. 

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The impact of the absorbent products distribution system on family caregivers of older people with incontinence in Italy: Perception of the support received

Background: Urinary incontinence is a chronic, age-related disorder, likely to increase in the future due to global population ageing. In Italy, as in most countries, older people with incontinence are often cared for by family caregivers, whose burden might be worsened by the perception of receiving an inadequate support, due to the lack of customized services. The aim of this study was to evaluate the impact of the absorbent products distribution method on family caregivers' perception of the support received. Methods: The study compared the distribution of pads to homes and in pharmacy via a survey reaching 101 family caregivers of older people with incontinence living in two geographical areas of the Marche Region (Central Italy) with different distribution systems. The association between "Quality of perceived support" (the outcome variable) and two types of absorbent products delivery methods (i.e. pharmacy and home distribution) was analysed by means of a general linear model. Results: Findings show that family caregivers receiving pads at home (HODs) perceived a higher support than those gaining them at the pharmacy (PHADs) (respectively 68.1% vs 35%). The association between perceived support level and distribution system remained even after correction for confounding factors. 70.2% of PHADs reported "Poor well-being", versus only 53.7% of HODs. The latter are more satisfied with the type of products distribution and thus less inclined to experiment different systems for the supply of products for the urinary continence (e.g. by voucher). The results are virtually reversed among PHADs and the difference is statistically significant (p < 0.001). Conclusions: When family caregivers feel supported by a more customized service delivery system, their perception of the care-related burden is mitigated. Thus, it is important to consider the needs of both family caregivers and cared for older people, and not only of the latter for designing a more suitable distribution of absorbent products. The best solution could be leaving end-users the freedom to choose how they want to get products (e.g. voucher or personal budget). This requires a reorganization of the current pads delivery systems adopted by the Marche and by other Italian Regional Health Systems. 

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Mediating effect of social support on the relationship between resilience and burden in caregivers of people with dementia

Objective: This study examined different predictive factors of burden in a sample of family caregivers of patients with dementia (PWD). In particular, the influence of social support and resilience on burden was tested, considering potential mediation effects. Methods: A total of 283 primary and family caregivers in Spain were evaluated using a standardized protocol to assess sociodemographic characteristics, clinical state of PWD and specific variables of caregiving and care providers. Results: The role of caregiver of PWD was more common in women, reporting significantly higher levels of burden than men. Resilience and social support accounted for most of the variance in burden. Furthermore, social support partially mediated the relationship between resilience and burden in caregivers. Conclusions: Caregivers’ resilience and social support are protective factors against burden in caregivers of PWD. Both factors should be considered for tailored interventions aimed at reducing the health costs of burden in this population. 

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Perception of social support and psychotic symptoms among persons with schizophrenia: A strategy to lessen caregiver burden

Background: Improving patients’ perception of social support is significant not only for their re-adaptation to life but also for alleviating caregivers’ burden. Aim: This study aims to examine an integrated model regarding social support, psychotic symptoms and caregiver burden. Methods: Persons with schizophrenia (N1 = 300) and their family caregivers (N2 = 300) in Xinjin County, Chengdu, China, completed the survey to report their demographics, patients’ perception of social support (Duke Social Support Index), psychotic symptoms (Positive and Negative Syndrome Scale) and caregiver burden (Burden Scale for Family Caregivers, Short Version). Structural equation modelling was utilised to test the proposed model. Results: The degree of caregiver burden differed significantly within subgroups of patients’ gender and education, as well as caregivers’ gender, education and employment. Caregiver burden was negatively related to patients’ age and household income. Social interaction partially mediated the relationship between instrumental and subjective social support (total effect = 0.451, p &lt;.01). Subjective social support fully mediated the impact of social interaction on psychotic symptoms (total effect = −0.099, p &lt;.05). In the final model, instrumental social support was positively associated with social interaction (p &lt;.001) and increased subjective social support (p &lt;.05). Increased subjective social support showed correlation with a lower degree of psychotic symptoms (p &lt;.01), which was related to a lower level of caregiver burden (p &lt;.001). Conclusion: This study shows the associations of patients’ social support with psychotic symptoms and caregiver burden. Culture-specific psychosocial interventions should be provided for both patients and caregivers to enrich external support and reduce psychotic symptoms and caregivers’ burden within the health care environment.

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Disease-related stressors of caregiving burden among different types of family caregivers of persons with schizophrenia in rural China

Background: Little is known about the impacts of schizophrenia on different types of caregiving burden. Aim: This study aims to examine how the severity of schizophrenia, social functioning and aggressive behavior are associated with caregiving burden across different kinship types. Method: The analytic sample included 300 dyads of persons with schizophrenia and their family caregivers in Xinjin, Chengdu, China. The 10th edition of the International Classification of Diseases (ICD-10) was utilized to identify the patients, whose symptom severity, social functioning and aggressive behavior were measured. Caregiving burden was estimated using the Burden Scale for Family Caregivers–short (BSFC-s). Results: A higher level of burden was significantly associated with female caregivers, larger family size, lower income, worse symptoms, poorer functional status and more aggressive behaviors. Parent caregivers showed greater burden if the patients had better functioning of social interest and concern or more aggression toward property. Mother caregivers showed greater burden than fathers. Spouses tended to perceive greater burden if the patients had better marital functioning, poorer occupational functioning or more aggressive behaviors toward property. Patients attacking others or a father with schizophrenia was related to a higher burden of child caregivers. A heavier burden of other relatives was correlated with patients’ more verbal aggression and self-harm. Conclusion: This study shows the distinct impacts of disease-related factors on the caregiving burden across different kinship types. Our findings have implications for health-care professionals and practitioners in terms of developing more targeted family-based or individualized intervention to ameliorate burden according to kinship types and deal with behavioral and functional problems in schizophrenia. 

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Predictors of caregiver burden after stroke in Nigeria: Effect on psychosocial well-being

Background: Family caregivers (CGs) are critical to the care and recovery of stroke survivors (SSs), particularly in the community. However, little is known about their psychosocial well-being, especially in developing countries. In this study, we assessed CG burden, psychiatric morbidity, quality of life (QoL), and predictors of burden. Materials and Methods: We recruited 150 dyads of CGs/SSs from two outpatient clinics in Nigeria. Data were collected through sociodemographic/clinical questionnaire, the Zarit caregiver burden interview, the World Health Organization QoL-BREF, and the Mini-International Neuropsychiatric Interview. Disability in SSs was graded with the Modified Rankin Scale. Results: Compared to CGs who were mostly females (86.7%) with a mean age of 42.8 (±12.6) years, SSs were older with a mean age of 61.6 (±12.5) years and were mainly males (62.7%). The mean CG burden score was 31.6 (±10.5) and eight in 10 CGs, 124 (82.7%) reported moderate-to-severe burden scores. Mental disorders in the form of depression and/or anxiety disorders were diagnosed in 26 (17.3%) CGs. Significant predictors of high-burden scores (P < 0.05) were incontinence in SSs, psychological symptoms in SS, worse poststroke disability, and performance of more CG tasks (B = 8.3, 4.5, 3.9, and 3.5, respectively). CGs QoL scores correlated negatively with burden scores, with medium-to-large effect sizes (r =-0.4-0.6) across QoL spheres. Conclusion: In this study, psychosocial burden in CGs was indexed by various determinants and impacted QoL negatively. Given the integral role of CGs to the care of SSs in the community, mental health services, psychosocial support programs, and stratification based on known vulnerability factors seems viable options for intervention, assessment, and planning. 

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A swift travel to stormy shore: Burden and distress experience by caregivers availing neuro-rehabilitation services

Background: Persons with neurological conditions predominantly receive their care from informal caregivers in India. The day-to-day caring of these persons requires tireless effort, energy, and empathy, and can often impact the quality of life of caregivers. In this study, we assess the impact of caregiving on the quality of life of informal caregivers. Materials and Methods: Fifty caregivers of patients with neuro-rehabilitation needs admitted in the neuro-rehabilitation ward of our hospital were recruited for this study. A descriptive research design, burden assessment schedule, and a self-reporting questionnaire were used to assess the distress level. The data collected were analyzed using descriptive, parametric, and nonparametric statistics. Results: Of the 50 caregivers recruited, 32 were female and 28 were male. The caregivers in our cohort were predominantly over 40 years of age. Thirty caregivers were from nuclear family and 36 families had below poverty line card. Majority of the caregivers reported physical and mental health burden due to their caregiving role. This was followed by need for external support to facilitate their caregiving role. Overall, the burden perceived by the caregivers ranged from moderate to severe. Conclusion: The caregivers come from diverse backgrounds, but nonetheless, they experienced significant physical and emotional burden while caring for the ill person at home. Providing adequate training and socioeconomic support to the caregivers may be helpful in reducing their burden. 

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The effectiveness of a life story program on stress reduction among Chinese American family caregivers of older adults

The study aims to examine the effectiveness of a life story program on reducing Chinese American family caregivers’ stress due to the burden of caregiving. This study conducted a quasi-experimental pre-posttest research design. A simple one-way ANOVA was performed to test the significance of the intervention on caregivers’ burden. The life story was not found to be directly statistically significant on reducing burden. However, through the life story intervention, it was discovered that among Chinese American family caregivers their perceived lower dependency of the care receiver, fewer needs of the care receiver and unknown time frame of continuation of care were statistically significant on the burden scale. The life story intervention improved family caregivers’ insight and judgment on the effect that care receivers’ needs and demands had on their continuation of caregiving. 

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Predictors of caregiver burden and care costs for older persons with dementia in Taiwan

Objectives: As a degenerative disease, the progression of dementia needs continued care provision and poses both psychological and financial burden for family caregivers of persons with dementia (PWD). This study seeks to compare predictors of care costs and caregiver burden, and to identify modifiable factors that could alleviate the burden faced by dementia caregivers. Methods: This study interviewed 231 PWD-caregiver dyads in a dementia clinic at a teaching hospital in southern Taiwan in 2013. A follow-up study was conducted a year later, and 167 dyads completed the second interview. Data collected included PWD characteristics, caregiver characteristics, relationship to PWD, and social support to caregivers. Caregiver burden was measured with the Zarit Burden Interview instrument. The association between each predictor variable and cost of care and caregiver burden scores was examined using linear mixed models. Results: Predictors of care costs were found to be different from predictors of caregiver burden: functional declines measured by Katz's activities of daily living (ADL) scale were associated with total cost as compared to behavioral disturbance measured by Neuropsychiatric Inventory (NPI), which showed no impact on care costs. However, NPI was a significant predictor of caregiver burden. Caregivers who were better-off financially also reported significantly lower caregiver burden. Conclusions: Since predictors of care costs were different from the predictors of caregiver burden, providing training to caregivers in addressing PWD's behavioral disturbance and proving financial assistance to low income caregivers could be effective in reducing caregiver burden.

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Caregivers of individuals with schizophrenia: Who are they and what are their challenges?

Purpose of review To better understand the overall burden of schizophrenia, we aimed to explore informal caregivers' experiences by evaluating the current evidence on caregiver and patient characteristics, the type of care provided by caregivers, and the impacts of caregiving on caregivers' lives. Recent findings Caregivers provide direct care, assistance with activities of daily living, and emotional, social, and financial support to individuals with schizophrenia. Increased duration of illness and of care, severe or persistent schizophrenia symptoms, criticism of the care recipient, financial burden, and patient disability intensify caregiver burden. Caregivers of individuals with persistent symptoms often feel overwhelmed, stressed, drained, burdened, frustrated, or angry. Financial impacts of caregiving include treatment costs for care recipients, providing financial support, and lost productivity and income. Depression and anxiety are common health impacts for caregivers, who also have increased physical healthcare resource use relative to healthy controls. Caregiver burden is reduced by formal support programs to improve caregivers' stress management and coping skills and informal sources of social support. Summary Targeted efforts to improve access to care and provide additional support for caregivers are needed to alleviate caregiver burden and improve outcomes for individuals with schizophrenia. 

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Investigation on the Status and Determinants of Caregiver Burden on Caring for Patients with Chronic Wound

Objective: To investigate the caring burden and its determinants of primary informal caregiver of patients with chronic wound. Approach: A prospective cross-sectional study of 132 pairs of chronic wound care recipients and their informal caregivers was included. The characteristics of patients and their informal caregivers as well as caregiver burden assessment by the caregiver burden inventory (CBI) were measured. Single factor analysis and multiple regression analysis were carried out to explore the independent determinants of caregiver burden on caring for patients with chronic wound. Results: Most of the caregivers were female with mean age of 54.57 ± 13.35 years, and 58.3% of the caregivers were adult children. The mean CBI score was 34.21 ± 9.69 at a medium level. The following variables increased the CBI scores of caregivers: long caring time per day for patients, powerlessness status of patients, insufficient self-efficacy, and social support of caregivers, the model was able to explain 67.5% of variance in caregiver burden (F = 47.167, p = 0.000, R2 = 0.675, adjusted R2 = 0.660). Innovation: Caring burden of patients with chronic wound as a key consideration of patient-centered wound care has received relatively little attention. In this study we report the status of caring burden and reveal its determinants of primary informal caregiver of patients with chronic wound. Conclusion: Wound professionals are suggested to pay attention to the caregiver burden of patients with chronic wound and develop family-centered intervention support service system according to the determinants of caregiver burden to alleviate the caregiver burden.

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An Italian pilot study of a psycho-social intervention to support family caregivers' engagement in taking care of patients with complex care needs: The Engage-in-Caring project

Background: The raising of disability and chronic illness burden among European population is calling for a new paradigm of care, focused on primary health care interventions. Engage-In-Caring is a novel multicomponent intervention clearly dedicated to improve family caregiver engagement in the care of patients with complex care needs, by supporting them to develop a stronger consciousness of their role, needs and skills. Method: Engage-In-Caring intervention's efficacy and feasibility have been evaluated through a single arm pre-post observational pilot study settled in Rome. A qualitative phase, consisting of literature analysis of caregivers' unmet needs and a final revision from an experts' group, led to the structuration of the intervention, following the Caregiver Health Engagement Model (CHE-Model). Afterwards, a quantitative phase allowed understanding the feasibility of the intervention through Kruskal-Wallis test on a sample of 47 caregivers. Results: Results showed a reduction of the physical burden (Chi Squared = 6,483; p =.01) perceived by the caregivers and increase of the health literacy (Chi Squared = 3,560; p =.059) after the intervention. Conclusions: Feasibility tests on caregivers of patients with complex care needs are promising: this pilot study suggests a first effectiveness evidence, particularly concerning aspects related to burden perception and improvements in health literacy. Randomised controlled trials on larger samples are needed.

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The emotional and psychological burden of the "burnout" in families of psychiatric patients

People, who assist patients with chronic health problems for work, voluntary or for family reasons, may be affected by burnout. This is defined as an excessive reaction to stress caused by one's environment that may be characterized by feelings of emotional and physical exhaustion, coupled with a sense of frustration and failure. A person who assists a suffering person, beyond the professional role, is indicated generally by the term "caregiver". The definition of Burnout in families is fairly recent, because the psychology of trauma has ignored a large segment of traumatized and disabled subjects (family and other assistants of "suffering people") unwittingly, for a long time. The burnout of secondary stress is due to one's empathic ability, actions trough disengagement, and a sense of satisfaction from helping to relieve suffering. Figley (1995) claims that being a member of a family or other type of intimate or bonded interpersonal relationship, one feels the others' pain. Closely associated with the suffering of the family caregiver is the concept of compassion fatigue, defined as a state of exhaustion and disfunction-biologically, psychologically, and socially - as a result of prolonged exposure to compassion stress and all that it evokes. In families, this can be the cause of serious conflicts and problems, quarrels, verbal and physical aggression, and broken relationships. The intervention on families requires practice and effectiveness approaches performed by experienced professionals. Some approaches focus more specifically, such as those that adopt a cognitive/behavioural technique with direct exposure, implosion methods, various drug treatments and family group psychotherapy. One of the most common models of intervention is based on the principle that the observation unit for the understanding of the disorder is not the single individual but the relationship between individuals.

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Caregiver Burden and Desire for Institutional Placement—The Roles of Positive Aspects of Caregiving and Religious Coping

Based on stress coping theory, this study investigated whether and how positive aspects of caregiving (PAC) and religiosity buffered the association between caregiving burden and desire to institutionalize (DTI). Secondary data (N = 637) were drawn from the baseline assessment of the Resources for Enhancing Alzheimer’s Caregiver Health II project. Descriptive analysis, bivariate correlation, and multiple linear regressions were conducted. The results indicated that higher levels of caregiver burden, daily care bother, and Revised Memory and Behavioral Problem Checklist bother were all significantly associated with higher level of DTI. Both PAC and religious coping were negatively associated with DTI; however, only PAC was significant. Only the interaction between daily care bother and religious coping was significant, which indicated that the harmful effect of daily care bother on DTI was significantly buffered among those who have religiosity. Study findings have important implications for policy makers and for providers who serve dementia family caregivers. 

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Time to move? Factors associated with burden of care among informal caregivers of cognitively impaired older people facing housing decisions: Secondary analysis of a cluster randomized trial

Background: Making health-related decisions about loved ones with cognitive impairment may contribute to caregiver burden of care. We sought to explore factors associated with burden of care among informal caregivers who had made housing decisions on behalf of a cognitively impaired older person. Methods: We conducted a secondary analysis within a cluster randomized trial (cRT) conducted in 16 publicly-funded home care service points across the Province of Quebec. The cRT assessed the impact of training home care teams in interprofessional shared decision making (IP-SDM). We assessed burden of care with the Zarit Burden Interview (ZBI) scale. We adapted Pallett's framework to inform our data analysis. This framework posits that factors influencing burden of care among caregivers fall within four domains: (a) characteristics of the caregiver, (b) characteristics of the cognitively impaired older person, (c) characteristics of the relationship between the caregiver and the cognitively impaired older person, and (d) the caregiver's perception of their social support resources. We computed the ZBI score and performed multilevel linear regression modelling. Results: Among 296 caregivers included in the dataset, the mean ZBI score was 29.8 (SD = 17.5) out of 88. The typical participant was 62.6 years old (SD = 11.7), female (74.7%), and caring for a mother or father (61.2%). Using multivariate analysis, factors significantly associated with caregiver burden mapped onto: caregiver characteristics (caregivers with higher burden were female, experienced higher decision regret and decisional conflict, preferred that their loved one move into the caregiver's home, into a private nursing home or a mixed private-public nursing home, and had made the decision more recently); relationship characteristics (spouses and children experienced higher burden); and caregiver's perception of social support resources (caregivers who perceived that a joint decision making process had occurred had higher burden). Conclusion: In line with the proposed framework used, we found that caregiver characteristics, relationship characteristics and caregiver's perception of social support resources were associated with burden of care. Our results will help design interventions to prevent and/or reduce caregivers' burden of care. Trial registration: NCT02244359. Date of registration: September 18, 2014. 

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Relationship Between Care Burden and Religious Beliefs Among Family Caregivers of Mentally Ill Patients

Families are considered as primary sources of care for individuals suffering from mental disorders. However, one of the major stresses in families is the infliction of a family member with mental illnesses causing dysfunction in health dimensions or generally their quality of life. Currently, most experts believe that religion can affect physical health and other aspects of human life. So, the aim of this study was to investigate “the relationship between care burden and religious beliefs among family caregivers of mentally ill patients.” This cross-sectional study was carried out in Iran on 152 families with mentally ill patients who were hospitalized in psychiatric wards. The sampling method was nonprobability and consecutive sampling method. The data collection instruments included a demographic characteristic questionnaire, Religious Beliefs, and Zarit Care Burden Questionnaires. The mean score for care burden was 30.99 (SD = 16.45). 5.9% of the participants reported a low level, and 39.5% experienced a moderate level of care burden. Moreover, the mean score for religious beliefs was 115.5 (SD = 13.49), and majority of the participants (70.4%) were endowed with strong religious beliefs. There were no significant associations between care burden and intensity of religious beliefs among the study samples (P = 0.483). Considering the results of this study indicating experience of moderate-to-high levels of care burden in families with mentally ill patients, it is recommended to consider such families and their religious beliefs as contributing factors in coping with challenges of mental disorders. 

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An asymmetric burden: Experiences of men and women as caregivers of people with psycho-social disabilities in rural North India

Caring for a family member with a psycho-social disability can be both rewarding and burdensome. This study analyses the experiences of caregivers of people with psychosocial disabilities (PPSDs) in rural communities in North India using relational gender theory. In-depth interviews with 18 female and male caregivers of PPSDs probed the social, emotional and health impacts of their caregiving role. Nine themes were identified that were grouped under three meta-themes: intra-personal, inter-personal and institutional impacts. Under the intra-personal meta-theme, all caregivers experienced high tension, with women describing almost overwhelming stress. Women minimised their role as caregivers, and felt negative and hopeless about their futures, while men had a more positive view of the future and themselves. Embodied experiences of psychological and social distress were consistently described by women, but not by men. Within the interpersonal meta-theme, men experienced opportunity for social connection and social support that was seldom available to women. Interpersonal violence with other household members was described by both men and women. Within the institutional meta-theme, both men and women described strength in unity, and gestures leading to the reordering of gender relations. These findings underline the significant and diffuse impacts of a gender order that values males and disadvantages females as caregivers of PPSDs, with the asymmetry of a greater burden for women. The findings point to the urgent need for global mental health policies that support and empower caregivers and that strengthen gender equality.

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Caregiver expressed emotion as mediator of the relationship between neuropsychiatric symptoms of dementia patients and caregiver mental health in Hong Kong

Objectives: Quality of life among Hong Kong's family dementia caregivers is a current heightened public health concern. This was one of the first East Asian studies to examine the role of family expressed emotion (EE) in the negative caregiver outcomes associated with dementia caregiving. EE comprises overinvolved and critical communications in families of people with mental illness. In this research, caregiver EE was evaluated as a mediator of the relationship between behavioral and psychological problems associated with dementia (BPSD) and negative caregiver outcomes. Method: Participants were 89 Hong Kong family caregivers (79% female, 84% married, 43% >50 years of age) of people with diagnosed dementia, recruited from elder day care centers. Caregivers completed the Neuropsychiatric Inventory (NPI), Cohen Mansfield Agitation Inventory (CMAI), Level of Expressed Emotion scale (LEE), Zarit Burden Interview, and Center for Epidemiological Studies Depression Scale (CES-D). Results: Agitation, delusions, hallucinations, aggression and irritability were BPSD most associated with caregiver burden and depression. EE significantly mediated the BPSD-negative caregiver outcome relationship. Among EE subscales, intrusiveness was significantly more common and less associated with negative caregiver outcomes. Caregiving hours, low family support, and religious nonaffiliation were associated with EE and poorer caregiver outcomes. Conclusions: The negative impact of BPSD on dementia caregivers in Hong Kong is influenced by EE. Higher scores on EE intrusiveness may be partly accounted for by filial piety, a strong sense of family responsibility characterized by high attentiveness to elderly family members. As EE is a potentially modifiable factor, interventions are considered.

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Care Burden and Mental Ill Health in Spouses of People With Parkinson Disease Dementia and Lewy Body Dementia

Objectives: To explore and compare levels of mental health, care burden, and relationship satisfaction among caregiving spouses of people with mild cognitive impairment or dementia in Parkinson disease (PD-MCI or PDD) or dementia with Lewy bodies (DLB). Methods: Spouses (n = 136) completed measures of mood, stress, resilience, general health, quality of life, care burden, and relationship satisfaction, as well as sociodemographic factors. Additionally, data on motor and neuropsychiatric symptom severity of people with PD-MCI, PDD, or DLB were obtained in a subsample. Results: Most spouses were married women (>85%) who provided a median of 4 years of care and 84 hours of weekly care. Among these, relationship dissatisfaction, stress, anxiety, care burden, and feelings of resentment were common. Spouses of people with PDD and DLB had significantly higher rates of burden, resentment, and depression compared to spouses of people with PD-MCI. Furthermore, unique group differences emerged whereby spouses of people with PDD had significantly longer duration of care provision, higher stress, more relationship dissatisfaction, and fewer positive interactions, compared to PD-MCI group, whereas anxiety and lower levels of mental health were prominent in spouses of people with DLB, compared to PD-MCI group. Despite this, the majority of spouses reported good quality of life, resilience, and satisfaction with the caring role. Conclusion: Both PDD and DLB significantly contribute to poorer mental health and higher levels of care burden in spouses. Clinicians should actively screen the risk of burden, stress, depression, and anxiety among caregiving spouses of people with these conditions.

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The Influence of Social Support and Care Burden on Depression among Caregivers of Patients with Severe Mental Illness in Rural Areas of Sichuan, China

Depression is one of the most common psychological consequences of caregiving. Caring for patients with severe mental illness (SMI) adds significant challenges to family caregivers' mental health. The purpose of this study was to describe the prevalence of depression among caregivers of SMI patients in rural areas of Sichuan province of China, to examine the influence of social support and care burden on depression, and to explore the intermediary effect of care burden between social support and depression among caregivers of SMI patients. Data were collected from 256 primary caregivers of SMI patients in rural Sichuan Province in China. We used structural equation modeling (SEM) to test the hypothesized relationship among the variables. We found that a total of 53.5% of caregivers had depression. Both care burden (β = 0.599, 95%CI: 0.392-0.776) and social support (β = -0.307, 95%CI: (-0.494)-(-0.115)) were directly related to depression, while social support had a direct association with care burden (β = -0.506, 95%CI: (-0.672)-(-0.341)). Care burden mediated the relationship between social support and depression. For the socio-demographic variables, gender, education level and per capita annual income of household had significant correlations with depression (p < 0.05). The results strongly demonstrated that social support and care burden were predictors of depression, especially social support. Policymakers should fully recognize the role of primary family caregivers in caring for SMI patients and promote interventions to decrease care burden and reduce caregivers' depression by improving social support and network. More attention should be given to female caregivers and caregivers with lower education and lower household income levels.

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Exploring the associations between spiritual well-being, burden, and quality of life in family caregivers of cancer patients

Objective: The spiritual dimension is important in the process of coping with stress and may be of special relevance for those caring for cancer patients in the various phases of caregivership, although current attention is most prevalent at the end of life. This study explores the associations among spiritual well-being (SWB), caregiver burden, and quality of life (QoL) in family caregivers of patients with cancer during the course of the disease. Method: This is a cross-sectional study. All participants (n = 199) underwent the following self-report questionnaires: the SWB-Index, the Medical Outcomes Study Short Form, and the Caregiver Burden Inventory (CBI). SWB scores were dichotomized at a cutoff corresponding to the 75th percentile. Statistical analyses were made using the Student t or by chi-square test to compare high and low SWB groups. Result The high SWB group reported significantly better Medical Outcomes Study Short Form scores in bodily pain (p = 0.035), vitality (p < 0.001), social activities (p = 0.001), mental health (p < 0.001), and in standardized mental component subscales (p < 0.001) than the low SWB group. No significant differences were detected between the two SWB groups in physical activity, physical role, general health, emotional status, and standardized physical component scale. The high SWB group also had better CBI scores in the physical (p = 0.049) and developmental burden (p = 0.053) subscales. There were no significant differences in the other CBI scores (overall and sections). Significance of results This study points out that high SWB caregivers have a more positive QoL and burden. Knowledge of these associations calls for more attention on the part of healthcare professionals toward spiritual resources among family cancer caregivers from the moment of diagnosis and across the entire cancer trajectory.

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Factors associated with long-term impact on informal caregivers during Alzheimer's disease dementia progression: 36-month results from GERAS

Objective: To identify, in caregivers of patients with Alzheimer’s disease (AD) dementia, factors associated with subjective (personal, physical, emotional, and social) and objective (informal caregiver time and costs) caregiver burden. Design: Prospective longitudinal European observational study: post-hoc analysis. Setting: Clinic. Participants: Community-dwelling patients in France and Germany aged ≥ 55 years (n = 969) with probable AD and their informal caregivers. Measurements: Mini-Mental State Examination (MMSE), Alzheimer’s Disease Cooperative Study—Activities of Daily Living (ADCS-ADL), 12-item Neuropsychiatric Inventory (NPI-12), Zarit Burden Interview (ZBI), informal caregiver basic and instrumental ADL hours (Resource Utilization in Dementia instrument), and informal caregiver costs. Mixed-effect models of repeated measures (MMRM) were run, including baseline and time-dependent covariates (change from baseline [CFB] to 18 months in MMSE, ADCS-ADL, and NPI-12 scores) associated with CFB in ZBI score/informal caregiver time over 36 months (analyzed using linear regression models) and informal caregiver costs over 36 months (analyzed using generalized linear models). Results: Greater decline in patient function (ADCS-ADL) over 18 months was associated with increased subjective caregiver burden (ZBI), hours, and costs over 36 months. Increased behavioral problems (NPI-12) over 18 months also negatively impacted ZBI. Cognitive decline (MMSE) over 18 months did not affect change in caregiver burden. Conclusions: Long-term informal caregiver burden was driven by worsening functional abilities and behavioral symptoms but not cognitive decline, over 18 months in community-dwelling patients with AD dementia. Identifying the drivers of caregiver burden could highlight areas in which interventions may benefit both caregivers and patients.

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Neurological patients’ and caregivers’ post-discharge challenges explored in a World Café

Problem/background: Post-discharge healthcare for patients with neurological conditions is indicated to be suboptimal. Aim: To capture hospital discharge experiences and ramifications among patients with neurological conditions, and informal caregivers, and their recommended solutions. Methods: A modified World Café was held November 2016. A facilitator moderated structured group discussions about post-discharge challenges, displayed real-time in GroupMap. Using the software's voting, ratings of priority challenges/issues and solutions were tabulated to identify whole group consensus. Findings: Eleven adults with neurological conditions (five females) and four adult informal caregivers (three females) participated. Major post-discharge challenges were: (i) inadequate self-management instruction, (ii) feeling discharged too early, (iii) family pressured to support patient without capacity, (iv) financial impact, (v) difficulties accessing social services, (vi) social isolation, (vii) inadequate support services, and (viii) poor communication with, and between, healthcare providers. Top-ranked solutions were: (i) counseling services at symptom onset, (ii) community neurological nurse referrals to, and liaison with, services, (iii) improved communication with general practitioner, (iv) community neurological nurse facilitating financial assistance, and (v) social worker in pre-diagnostic period facilitating financial assistance and support. Discussion: Peridischarge, patients and informal caregivers face a complexity of information and services, and struggle to self-manage conditions, experiencing burden that jeopardises their health and wellbeing. Proposed solutions to post-discharge challenges emphasise self-management, psychosocial support, care coordination, health system navigation, and communication. Conclusion: Generic community neurological nurses could link hospital and community-based services. Research is required regarding which translational and after hospitalisation care model improves care coordination and continuity, and care recipients’ capacity.

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The impact of acute adenolymphangitis in podoconiosis on caregivers: A case study in Wayu Tuka woreda, Oromia, Western Ethiopia. ‘If she was healthy, I would be free.’

Background: Podoconiosis, also known as mossy foot or endemic non-filarial elephantiasis, is a preventable form of lower-leg lymphoedema caused by prolonged (typically barefoot) exposure to soil derived from volcanic rocks. Acute adenolymphangitis (also called ‘acute attack’) is a serious complication of podoconiosis resulting in significant symptoms and worsening disability. Despite the well-known morbidity associated with podoconiosis, to date there have been no studies looking at the impact, or burden, of podoconiosis on caregivers. This study explored the experiences and impact of acute attacks on the caregivers of those with podoconiosis in one endemic district of Ethiopia. Methods/Principal findings: This qualitative study was based in Wayu Tuka woreda (district), Oromia, Western Ethiopia. 27 semi-structured interviews of those with podoconiosis and their caregivers were conducted in June 2018. Here we report the findings from the caregiver’s interviews. Data were analysed using NVivo 12. Directed content analysis, a qualitative approach related to thematic analysis, was used to analyse the results. This study highlights a previously unreported impact of acute attacks on the caregivers of those affected by podoconiosis. The findings demonstrate the significant social and financial pressures placed on podoconiosis-affected families which are exacerbated during acute attacks. This study also highlighted the emotional burden experienced by caregivers, the range of care activities placed on them and the limited support available. Conclusions: This study found a significant impact on the caregivers of those with podoconiosis, especially during acute attacks, in in Wayu Tuka woreda. It also highlighted the limited support available to caregivers. Further research is needed to understand whether this impact applies to podoconiosis caregivers across Ethiopia, and beyond, and to establish if there are wider implications of this important consequence of podoconiosis, for example on the economy and caregivers’ mental and physical health. 

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The effectivness of a strengths-oriented therapeutic conversation intervention on perceived support, well-being and burden among family caregivers in palliative home-care

Aims: To evaluate the effectiveness of a two-session multicomponent family strengths- oriented therapeutic conversation intervention among family caregivers of an individual with advanced/final stage cancer during ongoing palliative home-care.; Background: Family caregivers of patients in the advanced/final phases of cancer, experience multifaceted psychological distress and morbidity. Psychosocial interventions improve the well-being of family members who are caring for their close relative.; Design: A pre-experimental design with a one-group pre-test/posttests measurements.; Methods: Forty-eight family caregivers were assigned to receive two 60-90 min sessions of the intervention. The primary outcome was perceived emotional and cognitive support and psychological well-being, measured at baseline (T1). Then the participants were offered the first session of the intervention. About one week later, the second session was administered. The participants answered the same questionnaires again (T2) and then 2-4 weeks later (T3). The guideline; Criteria for Reporting Development and Evaluation of Complex Interventions 2, guided the reporting of the study.; Results: Family caregivers reported significantly higher emotional and cognitive support post-intervention (T2) and (T3). They also reported significantly reduced stress symptoms at (T3) and reduced caregiver burden post-intervention (T2) and at (T3).; Conclusion: The provision of the intervention contributed to extending knowledge about the usefulness of family conversations in the context of advanced/final stage cancer care.; Impact: There is a lack of knowledge regarding the benefit of therapeutic conversations interventions for family caregivers. The therapeutic conversation intervention offered, resulted in perceived support, decreased stress and decreased caregiving demands among caregivers in palliative home-care. 

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Associations Between Informal Caregivers’ Burden and Educational Level

We investigated the association between the education of informal caregivers’ (IC) and their physical and mental burden. We hypothesized that better-educated IC would have more resources available to manage the care situation and as a result show lower perceived burden. We conducted a population survey of 6,087 German residents aged 18+ years, 966 of whom reported to be IC. Results show that IC felt more often mentally than physically burdened. In the multivariate analyses, higher-educated IC did not have lower odds of feeling physically burdened than lower-educated IC, though they did have increased odds of feeling mentally burdened. The higher perceived mental burden of higher-educated IC may be related to fear of loss of self-fulfilment and autonomy. Support services should consider the mental burden of higher-educated IC and tailor their interventions accordingly.

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Australian mental health caregiver burden: a smallest space analysis

Objectives: To explore Australian mental health carers' prioritisation of key elements of caregiving and establish the extent to which particular issues contribute to carer burden.; Design: Cross-sectional survey.; Setting: All Australian States and Territories.; Participants: Responses were received from 231 Australian mental health caregivers.; Main Outcome Measures: The Involvement Evaluation Questionnaire was used to assess caregiver burden.; Results: Smallest space analysis identified three distinct regions, which we conceptualise as: 1) promoting the safety and health of mental health consumers; 2) impact of caring on caregivers' personal lives and 3) enabling daily living functional recovery of mental health consumers. The analysis demonstrates that carers are most concerned with enabling daily living functional recovery, for which the mean value was considerably higher than the personal impact and promoting safety and health regions. In terms of the individual questionnaire items, the issues of most importance are assisting with self-care, worrying about consumers' future, finances and general health, encouraging consumer involvement in activities and concerns over the treatment consumers are receiving.; Conclusion: Caregiving often came at significant personal cost. The burden that results from caring for mental health consumers could perhaps be alleviated through the expansion of psychiatric disability services, increasing government financial support and providing tailored psychosocial interventions that meet the needs of families.

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The impact of goal adjustment and caregiver burden on psychological distress among caregivers of cancer patients

Objectives: Research has demonstrated that serving in the caregiver role is often associated with increased symptoms of depression, stress, and anxiety, but some people fare better than others in managing the burden of caregiving. The goal of the present study was to examine the potential moderating role of goal adjustment (the ability to disengage from unattainable goals and reengage in alterative ones) on the relation between caregiver burden and distress in family caregivers of cancer patients. Methods: Caregivers of adult family members diagnosed with cancer in the past 3 years participated (N = 102). Participants were consented and completed online questionnaires on psychological distress, caregiver burden, and goal adjustment. Results: The ability to disengage from unattainable goals was associated with lower anxiety and stress in the face of increasing caregiver burden. By contrast, the ability to reengage in alternative goals was associated with lower depression as burden increased. Conclusions: The present study suggests that goal adjustment may play an important moderating role in the relationship between caregiver burden and distress. Caregivers who are better able to disengage from unattainable goals may experience less stress and anxiety, and caregivers who are better able to reengage in alternative goals experience less depressed mood. This study provides preliminary evidence that learning different ways to approach and adjust goals may reduce depression, anxiety, and stress in family caregivers. 

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Caring for a frail older person: the association between informal caregiver burden and being unsatisfied with support from family and friends

Background/objective: although informal caregivers (ICG) find caring for a relative mainly satisfying, it can be difficult at times and it can lead to a state of subjective burden characterised by -among others- fatigue and stress. The objective of this study is to analyse the relationship between perceived social support and subjective burden in providing informal care to frail older people. Methods: a descriptive cross-sectional study was conducted using data from a large nationwide longitudinal effectiveness study. Pearson correlations were calculated between the variables for support and burden. Logistic regression models were applied to determine the association between being unsatisfied with support and burden, taking into account multiple confounding variables. Results: of the 13,229 frail older people included in this study, 85.9% (N = 11,363) had at least one informal caregiver. Almost 60% of the primary informal caregivers manifested subjective burden, measured with the 12-item Zarit-Burden-Interview (ZBI-12). The percentage of informal caregivers that were unsatisfied with support from family and friends was on average 11.5%. Logistic regression analysis showed that being unsatisfied with support is associated with burden (OR1.85; 95%CI1.53–2.23). These results were consistent for the three groups of impairment level of the frail older persons analysed. Conclusions: the association between perceived social support and subjective caregiver burden was explored in the context of caring for frail older people. ICGs who were unsatisfied with support were more likely to experience burden. Our findings underline the importance of perceived social support in relation to caregiver burden reduction. Therefore efforts to improve perceived social support are worth evaluating.

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Factors predicting the health status of caregivers of stroke survivors: A cross-sectional study

In this cross-sectional study, we aimed to determine factors influencing the health status of caregivers of stroke survivors. A total of 126 caregivers of stroke survivors were recruited from three outpatient clinics in Thai Nguyen National General Hospital, Vietnam, from November 2016 to March 2017. Data were collected through six instruments: a demographic questionnaire, the Modified Barthel Index, the Zarit Burden Interview Scale, the Multidimensional Scale of Perceived Social Support, the Family Caregiver Conflict Scale, and the Short Form-36 Health Survey. Stepwise multiple regression was employed to analyze the data. Caregiver burden, patient's functional status, caregiver's age, and social support together explained 80.3% of the variations in health status of caregivers of stroke survivors. Caregiver burden was the strongest predictor of health status of these caregivers. 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 should be embraced to enhance health status of the caregivers of stroke survivors.

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Family Caregiving Situations and Engagement in Advance Care Planning

Background: Family members are involved in the decision-making process of advance care planning (ACP). However, there is limited evidence about how family caregiving situations affect engagement in ACP. Objective: To understand how agreement on caregiving situations and caregiving burdens are predictive of engagement in ACP of older adults. Design: Cross-sectional secondary data. Setting/Subjects: Subjects were nationally representative of adults ages 65 or older from the National Health and Aging Trends Study. Measurements: Informal engagement in ACP was measured based on whether respondents had discussed an end-of-life care option. The study involving formal engagement in ACP asked whether respondents have completed durable powers of attorney or living wills. Family members' agreement on caregiving situations and caregiving burdens were used to measure caregiving situations. We also include sociodemographic and health-related variables. Results: Higher levels of disagreement between family members concerning care for older adults were associated with engagement in formal ACP (odds ratio [OR] = 0.5); there were higher levels of caregiver burdens with engagement in formal ACP (OR = 1.1). The factors of being age 85 or older (OR = 2.2) and having fallen down in the previous year (OR = 1.9) were also related to formal engagement in ACP. Being white and having high school diplomas were associated with both informal and formal engagement in ACP. Conclusions: Caregiving situations may affect care recipients' decision-making regarding informal and formal engagement in ACP in different ways, suggesting different intervention strategies for different types of ACP.

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The Characteristics of Informal Cancer Caregivers in the United States

Objective: To review characteristics and experiences of informal cancer caregivers.; Data Sources: Recent empirical studies and review papers on informal cancer caregiving.; Conclusion: Increasing cancer prevalence and shifts toward outpatient care place substantial burden on caregivers. Cancer progression, treatment, and individual characteristics influence the caregiving experience. Longitudinal research and the development, testing, and implementation of effective interventions for cancer caregivers are needed.; Implications For Nursing Practice: Nurses play key roles in efforts to support cancer caregivers. Nursing interventions that incorporate caregiver preparation, support, and training in caregiving tasks are warranted.

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A responsibility that never rests - the life situation of a family caregiver to an older person

Background: When the ageing population increases, the burden and responsibility of close family members will likely increase. Those closely related who assume a great responsibility can be significantly affected in health, well‐being and daily life. Aim: This study aims to describe the life situation when family caregivers are imposed responsibility for an older person with complex care needs in their own home. Methods: In this Swedish qualitative study, ten family caregivers were strategically selected in order to achieve variations in the life situation. A reflective lifeworld research design based on phenomenological philosophy was used throughout the data collection with the lifeworld interviews and the analytic process. Findings: In terms of extensive responsibility, the life situation is complex and involves emotions that are difficult to manage. In essence, a paradoxical life situation is described which is experienced as both voluntarily and nonchosen at the same time. The responsibility never rests. The essential meaning is further illustrated with three constituents: loss of freedom, contradictory feelings and affected relationships. Conclusion: A life situation with extensive responsibility for an older family member interferes with the whole life situation with an impact on health and relationships with other people. The findings are crucial for professional caregivers in order to capture the nature of family support in a way that enables a meaningful life for both the family caregiver and the older person being cared for. Knowledge of this will give professional caregivers an increased awareness of the life situation of family caregivers and provide a better understanding of the support they are longing for, and, in some countries, such as Sweden, also are entitled to by law.

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Burden of informal care for individuals with schizophrenia and affective disorders prior to hospital admission

Background and objectives: Severe mental disorders require informal care, usually provided by family members of the affected. The aim of the study is to examine the burden of informal caregiving for individuals with schizophrenia and affective disorders prior to hospital admission in Bulgaria. Methods: The study has an observational, cross-sectional, retrospective design. Individuals with schizophrenia and affective disorders and their caregivers are evaluated upon the patients’ admission for inpatient treatment. The objective and subjective consequences of providing informal care are evaluated with the Burden Assessment Scale (BAS) as a primary outcome measure. Its factor structure and determinants of high burden of care are examined. Results: 117 individuals with mental disorder and 117 caregivers are evaluated, dichotomized in two groups according to the patient's diagnosis. The time spent in informal care is 5.7 hours per day (SD = 2.9) for schizophrenia and 3.9 hours per day (SD = 3.0) for affective disorders, p =.002. The mean score on the BAS is 44.7 (SD = 11.0) and 42.0 (SD = 12.8) respectively, p =.221. A common pattern of the burden with a 5-factor solution explaining 66% of the variance is presented, including the factors Limitations, Conflicts, Guilt, Trap, and Stigma. Contributors for the increase in the BAS are stigma (p <.001), history of threats (p =.014), supervision for disturbing behaviour (p <.048), younger age of the caregivers (p =.043), spouses/partners to the patients (p <.001), less social contacts (p =.017) and provision of informal care on a daily basis (p =.027). Conclusions: The caregivers of individuals with schizophrenia and affective disorders experience considerable objective and subjective burden.

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Factors Associated with Anxiety and Depression among Family Caregivers of Patients Undergoing Palliative Radiotherapy

Objective: The family caregivers of patients receiving palliative care experience high levels of anxiety and depression. The aim of the present study was to investigate the factors associated with family caregivers' anxiety and depression when caring for patients with advanced cancer in Greece.; Methods: The sample consisted of 100 patients undergoing palliative radiotherapy and their respective caregivers. Patients completed the Hospital Anxiety and Depression Scale (HADS) and the MD Anderson Symptom Inventory. Their respective caregivers completed the Oberst Caregiving Burden Scale, the Bakas Caregiving Outcomes Scale, and the HADS. Correlational and multiple regression analyses were conducted to identify potential predictors of anxiety and depression.; Results: The majority of patients were male (63.0%), whereas the majority of their caregivers were female (76.0%). The mean ages of patients and caregivers were 63.9 ± 10.8 and 53.3 ± 12.6 years, respectively. Caregiving anxiety and depression were associated with patients' variables, such as gender (P < 0.0005), primary cancer (P = 0.008), and past surgery (P = 0.002), and caregiver's variables, such as gender (P = 0.001), co-residence (P = 0.05), previous care experience (P = 0.04), and means of transport (P = 0.038). In multiple regression analyses, caregiving anxiety and depression were significantly predicted by caregivers' and patients' characteristics, in a model that accounted for 48% of the anxiety variance (P < 0.0005) and 39% of the depression variance (P < 0.0005).; Conclusion: The caregivers who experienced more anxiety and depression shared the following traits: they were women, cared for men with lung cancer, cared for patients not undergoing surgery, lived together, were younger, went to the hospital by private means of transport, had previous care experience, and perceived an increased degree of general burden. Further investigation of the factors that may affect caregivers' psychological state is required to better identify parameters that may predict it.

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State of Caring 2019: A snapshot of unpaid care in the UK

Carers UK carried out an online survey between March and May 2019. A total of 8,069 carers and former carers responded to the survey – we have only included responses from the 7,525 people who are currently providing care in this report. Compared to the carer population as a whole, respondents to this survey were more likely to be female and caring for a high number of hours every week. Of respondents to the survey:

  • 73% live in England, 10% live in Scotland, 9% live in Northern Ireland, and 8% live in Wales.
  • 81% identify as female and 18% identify as male.
  • 24% consider themselves to have a disability.
  • 1% are aged 0–24, 4% are aged 25–34, 13% are aged 35–44, 30% are aged 45–54, 32% are aged 55– 64, 14% are aged 65–74, and 5% are aged 75 and over. 
  • 3% identified as lesbian, gay or bisexual.
  • 5% described their ethnicity as black or minority ethnic.
  • 20% also have childcare responsibilities for a non-disabled child under 18. 
  • 39% are in paid work. Of those, 47% work full-time and 53% part-time. 
  • 31% have been caring for 15 years or more, 15% for between 10–14 years, 24% for 5–9 years, 26% for 1–4 years, and just 4% have been caring for less than one year. 
  • 46% care for 90 or more hours every week, while 17% care for 50–89 hours, 23% care for 20–49 hours, and 13% care for 1–19 hours a week. 
  • Most (74%) care for one person, 20% care for two people, 5% for three people, and 2% care for four or more people. 

As not all respondents completed every questions in the survey, a number of the figures given in this report, including those presented in this Appendix, are based upon responses from fewer than 7,525 carers. This, together with the sample sizes of different groups, should be taken into consideration when reading the results.

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Informal care provision across multiple generations in China

With increasing life expectancy, changes in family structure and, most recently, the relaxation of the hitherto strict family planning policies, understanding how mid-life individuals support multiple generations, particularly their older parents and younger grandchildren, is of increasing research and policy significance in China. This paper analyses data from the 2011 China Health and Retirement Longitudinal Study (CHARLS) to examine the characteristics of Chinese mid-life individuals aged 45–64 who are potentially being ‘sandwiched’ between providing care to older parents/parents-in-law and/or younger grandchildren (under age 16). Binary logistic and multinomial regression models shed light on the factors associated with providing support to one generation or multiple generations. The results highlight that amongst the Chinese mid-life sandwich generation, 58 per cent only provide care to their young grandchildren, 23 per cent only provide care to their parents/parents-in-law, whilst 15 per cent are simultaneously supporting both generations. Rather than acting as competing demands upon the mid-lifers’ time, the multivariate analysis provides evidence that the provision of intergenerational care is complementary, with caring for grandchildren increasing the probability of also supporting one's parents/parents-in-law, and vice versa. However, an increase in the number of younger grandchildren has a negative impact on the care provided to older parents/parents-in-law, indicating that at higher care intensities there may be competing demands across the generations.

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Prevalence and factors associated with suicidal ideation among family caregivers of people with mental disorders

Aims and Objectives: This study aimed to analyse the prevalence and factors associated with suicidal ideation among family caregivers of people with mental disorders.; Background: Studies conducted with family caregivers of people with dementia and cancer point out a high prevalence of suicidal ideation among these subjects; however, this aspect has not yet been investigated among family caregivers of people with mental disorders.; Design: This is a cross-sectional study, conducted with 537 family caregivers of patients from 16 Psychosocial Care Centers (CAPS) of the 21st Health Region of the state of Rio Grande do Sul, Brazil.; Methods: Question 17 of the Self-Reporting Questionnaire (SRQ-20) was used for suicidal ideation screening. The prevalence of suicidal ideation was calculated according to sociodemographic and care variables, with confidence interval estimate (95% CI). Crude and adjusted odds ratios were calculated by logistic regression. The Guidelines to Reporting of Observational Studies in Epidemiology (STROBE Statement) was adhered in this study (See File S1).; Results: The prevalence of suicidal ideation found in this study for the 30 days preceding the interview was 12.5% (95% CI: 10-15). The factors associated with the outcome were lower age, lower schooling, feeling of burden, self-report of stress problem and dissatisfaction with family relationships.; Conclusion: The prevalence of suicidal ideation among the studied family caregivers was high and strongly associated with issues regarding care, showing the need for interventions that provide support.; Relevance For Clinical Practice: Nurses are a large part of the workforce of the community mental health services. The careful characterisation of the subjects who show suicidal ideation, as performed in this study, may reveal specificities capable of refining the diagnostic potential for establishment of action plans in a timely manner, avoiding possible attempts or even the consummation of suicide.

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Association of physical and psychological health status between chronic obstructive pulmonary disease patients and their family caregivers

We performed this cross-sectional study with 72 chronic obstructive pulmonary disease (COPD) patients and their family caregivers to analyze relationship of physical and psychological health status between COPD patients and caregivers. Most caregivers were female (100%). Caregiver depression and burden were significantly associated with caregiving hours. In path analysis, the higher the patient's social support, the higher the patient's self-efficacy. The higher the patient's self-efficacy, the lower the care burden of the caregiver. Based on our results, there was a significant correlation of physical and psychological factors between patients and family caregivers.

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Cognitive and Functional Status of Persons Newly Enrolled at Dementia-Specific Adult Day Centers and Burden of Their Caregivers

Background and Objectives: Recognizing the important role that dementia-specific adult day centers have in maintaining persons with a neurocognitive disorder in their home, this article examines three critical indicators at the time when people first enroll in such a center: cognitive and functional impairment of the enrollee, and burden reported by their family caregivers. We also considered variations in these 3 indicators by race/ethnicity and by the relationship of caregiver to the new enrollee.; Research Design and Methods: We conducted a secondary analysis of data collected by a nonprofit organization operating 11 dementia-specific adult day centers located on the east coast of Florida. Nursing staff conducted intake interviews with enrollees and their caregivers, and assessed functional status within one month of admission. Instruments included the Zarit Burden Scale and components of the Minimum Data Set: the Brief Interview for Mental Status (BIMS) and 4 measures of functional status.; Results: On average the cognitive scores of newly enrollees were well-within the range indicated for severe impairment, and these levels did not differ by race/ethnicity. Burden reported by caregivers however differed significantly, with Latinx caregivers reporting the greatest burden and African American/Black caregivers reporting the least. Further, while daughters generally reported higher levels of burden than other family caregivers, Black daughters reported the least.; Discussion and Implications: Results suggest a need for greater dissemination efforts about adult day programs to the Latinx community, as well as attention to the disparate burden placed upon differing family relationships of caregivers to enrollees.

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The Role of Sexual Disinhibition to Predict Caregiver Burden and Desire to Institutionalize Among Family Dementia Caregivers

Neuropsychiatric symptoms in dementia are associated with greater caregiver burden and desire to institutionalize, though previous work largely examines the cumulative effects of many behavioral symptoms. Sexual disinhibition could be particularly stressful due to stigma attached to these behaviors. Links between care recipient sexual disinhibition, caregiver burden, and caregiver desire to institutionalize were examined by analyzing cross-sectional data from 730 family caregivers recruited online. Caregiver burden, caregiver desire to institutionalize, and neuropsychiatric symptoms, including sexual disinhibition, were assessed via caregiver report. Burden (P < .001) and desire to institutionalize (P = .008) were greater among caregivers who endorsed sexual disinhibition. Sexual disinhibition uniquely predicted desire to institutionalize after accounting for presence (P = .02) and severity (P = .03) of other neuropsychiatric symptoms. A similar pattern was seen for burden (presence P < .04; severity P = .06), and follow-up analyses revealed caregiver burden mediated the relationship between care recipient sexual disinhibition and caregiver desire to institutionalize (presence bias-corrected 95% confidence intervals [BCa 95% CI] [0.003, 0.08], severity BCa 95% CI [0.007, 0.06]). Sexual disinhibition appears to be a particularly difficult neuropsychiatric symptom for the family caregiver, contributing to desire to institutionalize via caregiver burden.

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Risk factors associated with the family care of people with serious mental illness

Background: The aim of the present study is to analyse the variables associated with the family care of people diagnosed with serious mental illness.; Material and Methods: A cross-sectional study was carried out involving caregivers of people with serious mental illness (SMI) who were known to the mental health services in Valencia (España) and associations for those with SMI. The sample comprised 417 caregivers who completed a sociodemographic questionnaire and the Zarit Burden Interview. Bivariate analyses (t-test, analysis of variance and Pearson correlation) were performed, as was a multiple linear regression model. Values of p < .05 were considered significant. The study was carried out in accordance with the recommendations of the ethics committees of the participating institutions.; Results: The statistical analyses showed significant associations between the sociodemographic and clinical variables of the caregivers and patients and the burden felt by caregivers of people with SMI. The importance of both formal and informal social support stands out as a protective factor against the consequences of the illness's impact on the main caregiver.; Conclusions: The role of spaces of mutual support is crucial. The results suggest that family psychoeducational programmes should be created, applied and evaluated in all mental healthcare services so as to reinforce training in mental health matters and provide support and assessment to caregivers in order to ease their burden.

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Health effects of caring for and about parents and spouses

Informal caregiving is a potentially attractive alternative to formal care but may entail health costs for the caregiver. We examine the mental and physical health impact of providing informal care and disentangle the caregiving effect – the effect of caring for someone in need – from the family effect – the effect of caring about someone in need. We account for the main sources of endogeneity in the caregiving decision using Arellano-Bond difference GMM models. We use four waves (2010–2013) of panel data from the Dutch Study on Transitions in Employment, Ability and Motivation (STREAM). We find that caregiving harms the mental health of caregivers the effect is more prominent for spousal caregivers. On top of this, a negative health shock of a family member also has a direct negative effect on mental health, providing evidence of a family effect. Our findings thus highlight that the total effect of having a sick relative may be underestimated when the family effect is not adequately accounted for. As the caregiving effect differs substantially between various types of caregivers, policies to cushion these effects should specifically target those subgroups of caregivers that carry the largest burden of informal caregiving.

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Who provides care in the last year of life? A description of care networks of community-dwelling older adults in the Netherlands

Background: Home-based care networks differ in size and composition, but little is known about the characteristics of care networks for those nearing the end of their lives. This study aimed to identify different types of home-based care networks of community-dwelling older adults in the Netherlands and to assess the association between care network type and the health status and socio-demographic characteristics of care recipients. Methods/design: We used data from participants of the Longitudinal Aging Study Amsterdam (2001–2013) with chronic diseases or functional limitations who died within 12 months of their last interview and received home based personal and/or household care (n = 146). Latent Class Analysis was used to model distinct end-of-life care networks among this pooled cross-section of older people whose characteristics imply care needs. The Akaike information criterion was used to determine the optimal model. Associations between network type and care recipient characteristics were explored using conditional inference trees. Results: We identified four types of care networks; a partner network (19%) in which care was mainly provided by partners, with little care from private caregivers or professionals, a mixed network (25%) in which care was provided by a combination of children, professionals and/or other family members, a private network (15%) in which only privately paid care was provided, and a professional network (40%) in which care was mainly provided by publicly paid professionals, sometimes with additional care from family or privately paid caregivers. Care networks near the end of life showed similar characteristics to those identified for older people more generally, but care seemed to be more intensive in the last year of life compared to the years preceding it. End-of-life care networks were mostly related to age, educational level and partner status. Formal care substitutes informal care whenever there is no partner or child present and able to provide care. Conclusion: Our findings indicate that personal and household care can be quite intensive in the last year of life, especially for partner caregivers. To prevent caregiver burden, it is important that professionals make sure partner caregivers receive adequate and timely support to cope with the care situation.

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Effects of Positive Thinking on Dementia Caregivers' Burden and Care-Recipients' Behavioral Problems

Most dementia care is provided at home by family members. This caregiving places an additional burden on the family members, which can negatively impact their physical and psychological well-being. The caregivers' burden can also contribute to behavioral problems in the care-recipients. The purpose of this study was to examine the mediating/moderating effects of positive thinking (PT) on the relationship between caregivers' burden (embarrassment/anger, patient's dependency, and self-criticism) and their care-recipients' behavioral problems (memory, depression, and disruption) in a sample of 100 dementia caregivers. Results indicated that caregivers' embarrassment, self-criticism, and perception of patient dependency predicts depression in care-recipients, and these relationships are moderated by PT. Results also indicated that as PT increases, the relationship between embarrassment and disruption goes down as well as does the relationship between self-criticism and depression. The study provided direction for the development of a PT training intervention to help caregivers to combat their burden.

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Burden among caregivers of people with mental illness at Jimma University Medical Center, Southwest Ethiopia: a cross-sectional study

Background: Burden of caregivers of people with mental illness (PWMI) is considered to be a negative impact of the care provided by the family to the patient. However, little is known about the extent of the burden among caregivers of PWMI in Ethiopia. The aim of this study, therefore, is to assess the magnitude and associated factors of burden among caregivers of PWMI at Jimma University Medical Center, 2017.; Methods: Institution-based cross-sectional study design was employed among 406 conveniently selected caregivers of PWMI and interviewed using a structured questionnaire. Family burden interview schedule (FBIS) was used to assess burden of caregivers. Bivariate and multivariable linear regression analyses were performed to determine the predictors of burden among caregivers.; Results: Nearly two-thirds [264 (65.0%)] of the participants were male with a mean age of 38.45 ± 12.03 years. The mean score for burden among caregivers on family burden interview schedule was 23.00 ± 10.71. Age of the caregivers (β = 0.18, p < 0.001), being female caregiver (β = 2.68, p < 0.01), duration of contact hours with the patient per day (β = 0.74, p < 0.001), perceived stigma by the caregiver (β = 0.47, p < 0.001), and providing care for patients who had history of substance use in life (β = 1.52, p < 0.05) were positive predictors of higher burden among caregivers. Whereas, caregivers' income (β = 7.25, p < 0.001), caregivers who had no formal education (β = 4.65, p < 0.01), and caregivers' social support (β = 0.78, p < 0.001) were negatively associated with higher burden among caregiver.; Conclusion: Caregivers of people with mental illness experience enormous burden during providing care for their relatives with mental illness. Therefore, creating community awareness and targeted interventions in the area of treatment access, stigma, financial, and other social support for people with mental illness and their caregivers would help out to reduce these burdens.

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Caring for the carer: quality of life and burden of female caregivers

Objective: To assess the quality of life and the burden of female caregivers.; Method: Descriptive, cross-sectional, quantitative study carried out with 224 informal caregivers from March to July 2016. Three instruments were used: a characterization form for the caregiver, the WHOQOL-Bref questionnaire and the Zarit Burden Interview. The following tests were used: Cronbach's Alpha, Kolmogorov-Smirnov, Kruskal-Wallis, Spearman and Mann-Whitney.; Results: The mean age of caregivers was 51.8 years with a standard deviation of 13.7. They were predominantly married, had a low income and low level of education, were first-degree relatives, had been providing care for one to five years and presented some pathology. The associations of quality of life that presented statistical significance were: income, marital status, number of people living with the caregiver and time of care.; Conclusion: The burden was negatively correlated with QOL, that is, the greater the burden, the more impaired will be the life of these caregivers.

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Informal health care: examining the role of women and challenges faced as caregivers in rural and urban settings in Ghana

Objective: Globally, the informal health sector is continuing to experience increasing growth despite the parallel development of the formal health care sector over the years. However, studies in Ghana concerning caregiving are limited since little attention has been given to the informal health care sector. This study therefore explores the role of women as caregivers and the challenges they face in the Kumasi Metropolis and Ejisu Juaben Municipality in Ashanti Region of Ghana. Methods: In-depth interviews were conducted with 20 caregivers from the two study areas. Data were analyzed and presented based on a content and thematic analysis approach. Results: Findings from the study showed that caregivers perform key roles including those of a domestic, health care, economic, social and spiritual nature. However, caregivers were confronted with many challenges, including inadequate funds, inability to work effectively, prolonged stress, limited time for socialization and emotional trauma. Conclusion: For caregivers to perform their roles efficiently and effectively, government and health care authorities must provide them with immediate financial support and training. Also, in the near future policy makers should put a comprehensive policy in place to bolster caregiving in general.

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Do Income Supplemental Programs for Older Adults' Help Reduce Primary Caregiver Burden? Evidence from Mexico

In countries such as Mexico without formal public long-term care policies, informal care becomes the main source of support for older adults. Alternative social programs, such as supplemental income programs, for older adults could alleviate caregiver burden, especially if supplemental income were to be used for paid care or to compensate non-paid family caregivers. This work is the first to analyze the effects of a supplemental income program for older adults on primary caregiver burden. To identify how such a program might affect caregiver burden, we analyze rich panel data on 433 adults 70 years and older in two communities, one receiving a supplemental income program and the other not, in Yucatan, Mexico. Data were collected in 2008 and 2009 among treatment and control groups before and 6 months after program introduction. We employ a difference-in-differences approach. In our sample, most care is provided by non-paid female caregivers. We find that individuals in both the treatment and control groups received fewer hours of care over time. The decrease was lower for older adults who received the supplemental income, but the difference with those who did not was not statistically significant. We also observe few changes on caregiving burden; even after program introduction, more than 98% of caregivers remained unpaid and the same primary caregiver remained. Altogether, our work suggests supplemental income programs have negligible effects on caregiving, making evident the urgent need for other strategies to support non-paid caregivers who bear most of the burden for old-age care in Mexico.

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Determinants of caregiver burden of patients with haemorrhagic stroke in China

Aim: The aim of this study was to assess the caregiver burden over time of patients with haemorrhagic stroke and the determinants of this. Background: Identification of the predictors for caregiver burden can be used to improve the outcomes of stroke survivors and caregivers. Few studies focus on the caregiver burden of patients with haemorrhagic stroke and how this changes over time. Design This was a prospective longitudinal study. Methods: A convenience sample of 202 stroke survivor/caregiver pairs were recruited in the neurosurgery unit from March 2015 to March 2016. The participants were assessed at three different times by face to face or telephone interview. Caregiver burden was assessed using the Bakas Caregiver Outcomes Scale. Sociodemographic data and other characteristics of the pairs were also collected. Multiple linear regression was performed to identify the determinants. Results: Caregiver burden decreased from T1 to T3 significantly. The physical function, depression of stroke survivors, and self‐rated burden of caregivers were the most important determinants for overall caregiver burden. The factors identified explained 41.6% to 67.4% of overall burden. Conclusion: Caregiver burden decreased over time, affected by factors from patients and caregivers. More professional caregivers are needed to support informal carers. 

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Depression of persons with dementia and family caregiver burden: Finding positives in caregiving as a moderator

Aim: The present study examined the association between depression of persons with dementia and family caregiver burden, as well as whether the association depended on the level of caregivers' ability to find positives in caregiving.; Methods: Based on the medical records of a local mental health hospital and the statistics of an epidemiological survey, this cross-sectional study included 157 major family caregivers of non-institutionalized dementia patients in the rural sector of Western China's Sichuan Province. They responded to the Cornell Scale for Depression in Dementia, a short version of the Zarit Burden Interview, a subscale of a caregiver meaning scale and demographic questions.; Results: Controlling for the demographic variables of the caregivers, the present study found that dementia patients' depression level was significantly associated with caregiver burden (P < 0.001), and the caregivers' levels of finding positives in caregiving significantly moderated the association (P < 0.05). Furthermore, the positive correlation between dementia patients' depression and caregiver burden was weaker among the family caregivers with a high level of finding positives in caregiving, compared with those with a low level of finding positives in caregiving.; Conclusions: This research suggests the importance of facilitating family caregivers of dementia patients to find positives in caregiving. It provides initial data for the development of dementia caregiver burden interventions that are based on the understanding of the deep meaning of dementia caregiving. 

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Dementia caregiver interventions in Chinese people: A systematic review

Aims: The aim of this systematic review was to examine the characteristics and the efficacy of dementia caregiving interventions among the Chinese population. Background: In recent years, an increasing number of dementia caregiving interventions have been developed for Chinese older adults living in Asia that aim to reduce caregivers' burden, depression and distress, and enhance quality of life. Little is known, however, on the nature and the efficacy of these interventions. Design: Systematic review with narrative summary. Data sources: We searched four databases for studies published in English between 1 January 1994–30 December 2017. Nineteen studies reported in 23 articles were included in the final analysis. Review methods: We used a set of criteria from the Cochrane Collaboration tool to assess for the risk of bias across studies. Results: We found that interventions varied in length, frequency, approach, and content, making comparisons across studies challenging. Caregivers' burden, depression, and distress were improved among most included studies. All studies that examined quality of life of caregivers (N = 6) showed improvement. Most of the interventions showed beneficial effects on care recipients' behavioural symptoms, agitation, and depression; cognitive function, however, failed to improve. Conclusion: Although the review found mixed results on intervention outcomes, the majority of interventions showed a potential to improve the health and well‐being of dementia caregivers and care recipients. This review provides suggestions for future dementia caregiving research in the Chinese population, such as inclusion of relevant theoretical frameworks and more rigorous research designs

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Caregiver Reward and Burden: Differing Constructs in Family Members Providing Care for Medically Ill Homebound Older Adults

Objective: This study examined the relationship between caregiver burden and reward and how each relates to factors, such as depression, within the caregiving dyad.; Method: A total of 101 older adults and their primary family caregivers were recruited upon enrolling in home health care services. Patients were assessed for sociodemographic information, depression, disability, pain, and caregiver support at baseline and at 8 weeks. Caregivers were assessed at baseline for sociodemographic information, depression, caregiver burden, caregiver reward, and caregiving tasks they provide.; Results: Burden and reward were significantly inversely correlated, but differentially associated with distinct patient and caregiver variables. Patients whose caregivers reported higher baseline levels of caregiver reward were more likely to have lower depression scores at follow-up.; Discussion: Given that different aspects of patients and caregivers influence reward and burden, assessing caregivers for both burden and reward may better target caregiver interventions at the individual and family levels, particularly for older adult depression.

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Family Caregivers' Subjective Caregiving Burden, Quality of Life, and Depressive Symptoms Are Associated With Terminally Ill Cancer Patients' Distinct Patterns of Conjoint Symptom Distress and Functional Impairment in Their Last Six Months of Life

Context: Family caregivers constitute a critical component of the end-of-life care system with considerable cost to themselves. However, the joint association of terminally ill cancer patients' symptom distress and functional impairment with caregivers' subjective caregiving burden, quality of life (QOL), and depressive symptoms remains unknown. Objectives/methods: We used multivariate hierarchical linear modeling to simultaneously evaluate associations between five distinct patterns of conjoint symptom distress and functional impairment (symptom-functional states) and subjective caregiving burden, QOL, and depressive symptoms in a convenience sample of 215 family caregiver-patient dyads. Data were collected every 2 to 4 weeks over patients' last 6 months. Results: Caregivers of patients in the worst symptom-functional states (States 3-5) reported worse subjective caregiving burden and depressive symptoms than those in the best two states, but the three outcomes did not differ between caregivers of patients in State 3 and States 4-5. Caregivers of patients in State 5 endured worse subjective caregiving burden and QOL than those in State 4. Caregivers of patients in State 4 suffered worse subjective caregiving burden and depressive symptoms but comparable QOL to those in State 2. Conclusion: Patients' five distinct, conjoint symptom-functional states were significantly and differentially associated with their caregivers' worse subjective caregiving burden, QOL, and depressive symptoms while caring for patients over their last 6 months.

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Impact of a student-driven wellness program for individuals with disabilities on caregivers and family members

Aim: Few studies have addressed impact of participation in exercise programs on caregivers or family members of individuals with disabilities.; Purpose: To evaluate the impact of interaction rich wellness program on family members or caregivers of participants.; Methods: Nine family members or caregivers were selected for interviews. Interviews were transcribed and analyzed using a thematic approach.; Results: Five themes were constructed from analysis of the interview data: benefit of class to self, positive feelings about participation, relationship dynamic, importance of classroom interaction, and burden of class. The first four themes occurred in caregivers despite individual burden determined by self-reported interview scores on the Zarit Burden interview.; Conclusion: This study demonstrated the impact of an interaction rich exercise program on wellness of participants with disabilities and respective caregivers or family members. Caregivers or family members do acknowledge benefits of the program to themselves. However, the program does not reduce caregiver burden. Implications for Rehabilitation Rehabilitation professionals should be cognizant of the potential for indirect benefit of rehabilitation or exercise programs on family members or caregivers of patients. Rehabilitation programs should consider the indirect benefit on the caregivers of patients when evaluating the burden of a program on caregivers. Rehabilitation professionals should focus on interpersonal interaction to aid in positive outcomes for both patients and caregivers.

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Stress and burden faced by family caregivers of people with schizophrenia and early psychosis in Hong Kong

Background/aim: Families, especially in Chinese society, play a crucial role in care provision for relatives with schizophrenia, but the burden of caregiving has shown to cause significant distress among caregivers. The aim of the study is to assess the degree of stress and burden among caregivers of relatives with schizophrenia and early psychosis in Hong Kong.; Methods: A cross-sectional survey was conducted in 454 caregivers recruited from two mental health non-governmental organisations and the outpatient clinic of a psychiatric hospital. Data were collected through a questionnaire administered via face-to-face or telephone interview.; Results: Caregivers attributed most of their conflicts with the ill relative or other family members to their own lack of knowledge of patient symptoms (56.4%), other family members' lack of knowledge of patient symptoms (46.9%) or the ill relative's refusal to take medications (43.0%). Most of the caregivers had corresponding stress scores of 5 (scale: 1-5; mean = 3.88, 3.85 and 4.19, respectively). Nearly, a third (30.2%) of the caregivers surveyed reported an overall stress score of 5 (mean = 3.56). Regarding psychosocial problems, 78.0%, 49.8% and 45.8% of caregivers experienced anxiety, reduced socialising and insomnia, respectively.; Conclusions: Caregivers of relatives with schizophrenia and early psychosis experience significant stress and psychosocial burden. To help them cope with distress, community support services should be strengthened. Moreover, long-acting injectable antipsychotics are worth considering to alleviate caregiver burden due to ill relatives' medication compliance issues.

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Refining caregiver vulnerability for clinical practice: determinants of self-rated health in spousal dementia caregivers

Background: Caregivers of a family member with a chronic disability or illness such as dementia are at increased risk for chronic disease. There are many factors that contribute to dementia caregiver vulnerability and these factors can be challenging to assess in clinical settings. Self-rated health (SRH) is an independent measure of survival and physical health in the elderly. As an inclusive measure of health, SRH has been proposed as a reliable way to assess a patient's general health in primary care. Therefore, we sought to identify determinants of poor/fair SRH versus categories of at least good SRH in informal caregivers.; Methods: In a cross-sectional study, we examined 134 elderly (≥55 years) providing in-home care for a spouse with dementia who rated their own health with a single-item question: "In general, would you say your health is excellent, very good, good, fair or poor?". In a multivariable model, we compared caregivers with poor/fair SRH to those with good, very good, or excellent SRH on demographics, health characteristics (health behaviors, physical health indicators, psychosocial factors) and caregiving-specific stress (a composite index/total of four caregiving-specific stressors: years of caregiving, dementia severity, care recipient functional impairment and perceived caregiver burden).; Results: Compared with caregivers who rated their own health as either good (31.3%), very good (38.8%) or excellent (14.2%), caregivers with poor/fair SRH (15.7%) were more likely to have lower physical function and total greater caregiving-specific stress. More years of caregiving, severe dementia and care recipient functional impairment, but not perceived caregiver burden, were also more likely among caregivers with poor/fair SRH. Additionally, high negative affect and low positive affect were more likely in caregivers with poor/fair vs. good or excellent and very good or excellent SRH, respectively.; Conclusions: Caregivers with poor/fair SRH were characterized by higher levels of medical comorbidity, low physical function, high negative, but low positive affect and longer duration of caregiving, as well as more severe dementia and greater functional impairment of the care recipient. These findings suggest that caregivers need to be more closely evaluated and targeted for preventive interventions in clinical practice.; Trial Registration: ClinicalTrials.gov registration number: NCT02317523 .

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Recovery from burden: informal caregiver profiles that predict treatment success

Background: Neuropsychiatric symptoms (NPI) of dementia are important determinants of caregiver burden, while caregiver coping styles and competences can relieve burden. Caregivers differ in coping with the demands made on them and in experienced burden. What changes in caregivers explain recovery from burden, and which caregiver characteristics predict recovery from burden over time, and does treatment make a difference?Methods: This study into recovery from burden was a secondary analysis of data collected in a formerly conducted randomized controlled trial (RCT) on the integrated reactivation and rehabilitation (IRR) programme in a psychiatric-skilled nursing home, compared to usual care (UC; i.e. day care, assisted living arrangements, and nursing home wards). For this secondary analysis, longitudinal data on persons with dementia and caregivers were used from baseline (T1), end of treatment (T2), and at nine months (T3). Results: Caregivers with an improved sense of competence (SCS) who care for persons with dementia with a decreased severity of NPI have the highest chance of recovering from burden (CSI). Caregivers with a tendency to feel involved with others and sympathize with others (affiliation, ICL-R) have a slightly lower probability of improvement with respect to their sense of competence in the short term. The number of improved caregivers was higher in IRR than UC. Conclusion: Recovery depends on both an improved sense of competence and a decreased severity of NPI. Combined interventions that address both NPI and focus on enhancing caregiver's sense of competence have added value when it comes to decreasing caregiver burden.

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Caregiver burden and family functioning in different neurological diseases

Aim of this study is to examine caregiver burden and family functioning in different neurological conditions. Forty-two primary caregivers of patients with Amyotrophic Lateral Sclerosis (ALS), Alzheimer’s Disease and other dementia (AD), Parkinson’s Disease (PD), Acquired Brain Injuries (ABI) and Multiple Sclerosis (MS) were administered scales for the evaluation of caregiver burden (CBI) and family functioning (FACES IV). Caregiver burden was overall high, with caregivers of patients with ALS and ABI having exceeded the CBI cut-off score for possible burn-out. The average scores of caregivers of patients with AD or other dementia and PD were close to the cut-off score, whereas those of caregivers of patients with MS were significantly lower than the others. Family cohesion, family satisfaction and the quality of family communication were associated with reduced levels of caregiver burden, whereas disengagement was associated with a higher burden. The data from the present study confirm that caregiver burden is a relevant issue in the context of neurological diseases, especially for those causing higher degrees of impairment. Significant correlations with family functioning emerged as well, highlighting the importance of studying and treating caregiver burden within the context of family relations

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Caregiver burden and bereavement among family caregivers who lost terminally ill cancer patients

Objective: Family caregivers (FCs) in China provide hospice care to terminally ill cancer patients; however, few studies have been conducted in China on caregiver burden and bereavement experiences as a process that continues over time. The purpose of this study was to identify the main elements of caring and bereavement experiences for FCs caring for patients diagnosed with terminal cancer.; Method: Twenty in-depth qualitative semistructured interviews were conducted with FCs providing care in a hospice unit in Shenzhen, Southern China. Interview transcripts were analyzed via thematic content analysis.Result A framework based on the following eight principal themes was developed through content analysis of our FC interviews: symptoms of the illness, the truth-telling process, attitudes toward death, the "color" of death, social and professional support, the moment of death, and grief and loss. Significance of results The analysis showed that caregiving may positively or negatively influence the bereavement process.

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Realist Review: Understanding Effectiveness of Intervention Programs for Dementia Caregivers

Purpose Caring for patients with dementia is a challenging issue entailing heavy responsibility. Many interventions for caregivers have been developed, but their effectiveness is not clear. This study aimed to examine how, why, and under what circumstances interventions for dementia caregivers affected their burden of caring. Methods Authors used a realist review approach to explore the evidence for how different interventions reduce the burden of dementia caregivers. We completed the literature review about the burden of dementia caregivers and extracted the theoretical concepts to explain context-mechanism-outcome configuration why an intervention may be effective in some situations and not others. Six databases were searched for experimental or quasi-experimental studies conducted from 2008 to 2017. Of 1,225 screened studies, 10 studies were eligible for inclusion. Results None of the studies included all the derived contexts while explaining in detail the mechanism of the intervention effectiveness. Among contexts, the variable of other family members requiring care was not included in all studies. Among the analyzed studies, no studies have applied repeated intervention. Most studies included only some variables of context and mechanism, and these variables did not directly explain the effectiveness of intervention. The effect of outcome variables was significant for each study, and the effects of research intervention and national services could not be separately described. Conclusion Authors conclude that Korean culture's emphasis on relationships with others increases the burden of care. In context, Confucian norms and traditional femininity of Korea were reflected in the core. It is necessary to check the homogeneity of participants and the design of intervention to verify the effectiveness of the outcome variable of psychological burden.

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Predictors of burden in Australian mental health caregivers: a cross-sectional survey

Background: The shift towards providing mental healthcare in the community has resulted in caregivers becoming more involved in the delivery of these services. Supporting mental health consumers can be burdensome which, in conjunction with the anguish that may result from observing their relative develop a mental illness, can lead to carers experiencing significant levels of distress.; Aims: This study aimed to quantify the extent to which specific aspects of caregiving contribute to mental health burden in Australia.; Methods: Participants were included if they were Australian mental health caregivers. An online questionnaire was distributed via email. Multivariate logistic regression was used to identify predictors of burden in mental health caregivers.; Results: Completed questionnaires were collected from 231 respondents. The logistic regression analysis yielded five factors that contributed significantly to mental health caregiver burden. Of these factors, a strained atmosphere and regularly carrying out tasks for consumers were the two strongest predictors of burden.; Conclusion: Community health professionals could focus on interpersonal relationships between family members, access to disability and financial support services, and carers' views about the quality of healthcare provided to consumers. Addressing these issues may decrease carer burden and improve the quality of life for all family members.

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Levels of Satisfaction, Workload Stress and Support Amongst Informal Caregivers of Patients Receiving or Not Receiving Long-Term Home Nursing Care in Poland: A Cross-Sectional Study

The role of informal caregivers was included in the Assumptions of the Long-Term Senior Policy in Poland for 2014-2020. The document acknowledged the necessity of diagnosing the needs of informal caregivers of elderly people and to implement systemic solutions that would enable the provision of assistance for them. In response, this study aimed to describe the situation of caregivers of patients receiving versus patients not receiving Long-Term Home Nursing Care (LTHNC; i.e., a formal program including regular visits by a nurse specializing in home care) in terms of caregiver socio-demographic characteristics, health self-assessment, work overload, satisfaction derived from being a caregiver, and the quality of perceived support. A cross-sectional study was conducted using the Carers of Older People in Europe (COPE) Index in 2015 in the north-eastern part of Poland involving 170 caregivers of patients supported with LTHNC and 86 caregivers of patients staying at home and not receiving LTHNC. We found that caregivers for patients receiving LTHNC were significantly less overloaded with care work than caregivers for patients without LTHNC support (p < 0.001). LTHNC support was also related to the level of satisfaction with providing care: Caregivers for patients receiving LTHNC were significantly more satisfied with performing their role and felt greater support than caregivers for patients without LTHNC (p < 0.001). Our study provides evidence for a positive relationship between LTHNC and the situation of informal caregivers of dependent elderly people at home. A formal program of visits by a nurse specializing in long-term home care may facilitate the provision by caregivers of better informal care to patients staying at home.

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The Effect of a Family-Based Training Program on the Care Burden of Family Caregivers of Patients Undergoing Hemodialysis

Background: The family caregivers of patients undergoing hemodialysis are faced with multiple physical, psychological, social, economic, and spiritual problems that increase their care burden. The present study was conducted to determine the effects of a family-based training program on the care burden of family caregivers of patients undergoing hemodialysis.; Materials and Methods: The present controlled, randomized, clinical trial was conducted on 70 caregivers of patients undergoing hemodialysis in Ali Asghar and Zahray-e Marzieh hospitals in Isfahan, Iran, in 2017. After conducting convenient sampling, 70 participants were randomly assigned into 2 groups (35 in each group). The experimental group received the family-based training program and the control group received usual care plan. Data were collected using the Zarit Burden Scale before, immediately after, and 1 month after the intervention and were then analyzed by independent t-test, Chi-square, and Analysis of Covariance (ANCOVA) repeated measure.; Results: The results showed that both groups were homogeneous in terms of their demographic data and showed no significant differences. The main effect of group was significant, indicating a significant decrease in care burden in the experimental group after the intervention (F1,67 = 1089, p < 0.001). However, the interaction of time and group was not significant, indicating insignificant difference in burden 1 month after intervention (p > 0.05).; Conclusions: Since the family-based training program successfully reduced the burden of care immediately after intervention, similar family-based training programs are recommended to be designed and developed. However, insignificant time effect suggests further researches of long time effects of such program.

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Are the Elderly Perceived as a Burden to Society? The Perspective of Family Caregivers in Belgium and Kenya: A Comparative Study

Introduction: It is estimated that 70% to 80% of informal care for frail and disabled elders is provided by family caregivers (FCGs).; Aim: To better understand how caregiving for the elderly has affected FCGs lives and to compare the perspective of these caregivers in Belgium and Kenya.; Method: Semistructured interviews were undertaken with 15 FCGs in Kenya and 15 FCGs in Belgium. Interpretative phenomenological analysis was used to identify themes.; Results: Themes discovered in the experience of family caregiving included profile of the care receiver, impact of caregiving on the FCG, cultural values and norms, challenges in caregiving, coping strategies and caregiver well-being.; Discussion: FCGs in both Kenya and Belgium identified experiencing serious concerns. In Kenya, the lack of resources and formal structures play a more important role than in Belgium. Despite this difference, culture-specific views and norms are paramount to explaining the FCG experience in the two countries.

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Positive and negative impacts of schizophrenia on family caregivers: a systematic review and qualitative meta-summary

Purpose: Schizophrenia places a heavy burden on the individual with the disorder, as well as on his or her family; this burden continues over the long course of the disease. This study aimed to provide an overview of the positive and negative impacts of schizophrenia on family caregivers.; Methods: From April to June 2017, two investigators conducted a systematic review and meta-summary of studies obtained from five electronic databases and the footnotes and citations of eligible studies. Qualitative studies that explored the experiences of family caregivers of individuals with schizophrenia were included. Study findings published between 1993 and 2017 were extracted and synthesised using narrative and summative approaches.; Results: After the removal of duplicates, independent reviewers screened 864 records. Subsequently, 46 full-text articles were assessed for eligibility and 23 papers were included in the synthesis. Negative impacts identified were traumatic experiences, loss of expectation of life and health, lack of personal and social resources, uncertainty and unpredictability, family disruption, conflict in interpersonal relationships, difficulty in understanding, and stigma and heredity. Meanwhile, the positive impacts identified were family solidarity, admiration, affirmation, affection, compassion, learning knowledge and skills, self-confidence, personal growth, and appreciation.; Conclusions: Analysis of the studies suggested that family members of individuals with schizophrenia face a series of traumatic situations during the course of the illness. Their subsequent experiences can be conceptualised as a continuous circle of caregiving, in which the positive impacts can be centrally positioned within the negative impacts.

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Study of family burden in substance dependence: A tertiary care hospital-based study

Background: A substance-dependent person affects almost all aspects of family life, for example, interpersonal and social relationships, leisure time activities, and finances. Substance dependence invariably increases conflicts, negatively affects family members, and burdens the families. Aims and Objectives: To assess family burden perceived by primary caretakers (PCTs) of individuals with substance dependence and relevant clinico socio demographic profile of individuals as well as PCTs. Materials and Methods: Individuals and primary caretakers (n = 150) attending psychiatry OPD and emergency were included in the study. Individuals were selected by convenient sampling. The individuals and PCTs were administered psychiatric thesis/interview pro forma and drug abuse schedule. PCTs were administered "family burden interview schedule." Results: Majority of caretakers had moderate objective burden (65.3%) and severe subjective burden (74%). Objective burden was more in areas of "financial burden" and "disruption of routine activities." Objective burden had correlation (P < 0.05) with monthly family income, monthly expenses on substance, number and type of substances, treatment history, sex and type of caretaker. Subjective burden was dependent on sex and type of caretaker and treatment history of the patient. Conclusion: Our study concluded that substance dependence is associated with substantial burden for family members, more for subjective and objective burden in families with low income and with patients who are dependent on more number of substances and had taken treatment in the past. Higher proportion of severe burden was reported by female caretakers. These findings suggest directions for future research in this area.

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Factors influencing caregiver burden in families of hospitalised patients with lung cancer

Aims and Objectives: To investigate the factors influencing caregiver burden in families of hospitalised lung cancer patients.; Background: Even though cancer symptoms among hospitalised lung cancer patients are serious and negatively affect caregivers, few research regarding to the factors of caregiver burden in hospitalised lung cancer patient has been carried out.; Design: Cross-sectional, descriptive and correlational study.; Methods: A convenience sample of hospitalised lung cancer patients (n = 107) was recruited from K University hospital in South Korea. Family depression, social support and caregiver burden as well as patients' lung cancer symptoms were measured using peer-reviewed and standard measurement tools. Descriptive statistics and parametric tests including stepwise regression were used to analyse the data. The STROBE guideline has been used to report this study.; Results: Caregiver burden among the families of hospitalised lung cancer patients was high; the regression model for caregiver burden among participants' families was significant. Depression among families was found to be the most influential factor for caregiver burden, followed by patients' lung cancer symptoms.; Conclusions: This study revealed that family caregivers' depression and patients' lung cancer symptoms were the most significant factors for families' caregiver burden. Future research should be conducted to identify the causes of depression among families of hospitalised lung cancer patients and develop management programmes to address such causes. It is also necessary to investigate the causes of increased caregiver burden that differentiate families of lung cancer patients from other cancer patients and provide education to help such families understand such causes.; Relevance To Clinical Practice: Findings from this study show that family's depression and lung cancer symptoms were significant factors for caregivers' burden. Hence, it is suggested for the healthcare providers to find for the best solution/strategies to reduce the caregiver's burden.

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Relationships and burden: An empirical-ethical investigation of lived experience in home nursing arrangements

Quantitative research has called attention to the burden associated with informal caregiving in home nursing arrangements. Less emphasis has been placed, however, on care recipients' subjective feelings of being a burden and on caregivers' willingness to carry the burden in home care. This article uses empirical material from semi-structured interviews conducted with older people affected by multiple chronic conditions and in need of long-term home care, and with informal and professional caregivers, as two groups of relevant others. The high burden of home-care arrangements is unanimously stressed by all three groups involved in the triangle of care. An empirical-ethical investigation of what can be legitimately expected from family members and informal caregivers, informed by Frith's symbiotic empirical ethics approach, was undertaken. Key tenets from the special goods theory and nursing professionalism are used as analytical tools. The study concludes that the current situation may hinder professional development and can reinforce feelings of being a burden to relevant others.

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Perspectives on the Delirium Experience and Its Burden: Common Themes Among Older Patients, Their Family Caregivers, and Nurses

Background and Objectives: While there are qualitative studies examining the delirium-related experiences of patients, family caregivers, and nurses separately, little is known about common aspects of delirium burden among all three groups. We describe common delirium burdens from the perspectives of patients, family caregivers, and nurses.; Research Design and Methods: We conducted semistructured qualitative interviews about delirium burden with 18 patients who had recently experienced a delirium episode, with 16 family caregivers, and with 15 nurses who routinely cared for patients with delirium. We recruited participants from a large, urban teaching hospital in Boston, Massachusetts. Interviews were recorded and transcribed. We used interpretive description as the approach to data analysis.; Results: We identified three common burden themes of the delirium experience: Symptom Burden (Disorientation, Hallucinations/Delusions, Impaired Communication, Memory Problems, Personality Changes, Sleep Disturbances); Emotional Burden (Anger/Frustration, Emotional Distress, Fear, Guilt, Helplessness); and Situational Burden (Loss of Control, Lack of Attention, Lack of Knowledge, Lack of Resources, Safety Concerns, Unpredictability, Unpreparedness). These burdens arise from different sources among patients, family caregivers, and nurses, with markedly differing perspectives on the burden experience.; Discussion and Implications: Our findings advance the understanding of common burdens of the delirium experience for all groups and offer structure for instrument development and distinct interventions to address the burden of delirium as an individual or group experience. Our work reinforces that no one group experiences delirium in isolation. Delirium is a shared experience that will respond best to systemwide approaches to reduce associated burden.

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Associations among behavioral and psychological symptoms of dementia, care burden, and family‐to‐work conflict of employed family caregivers

Aim: The present study aimed to examine the associations among behavioral and psychological symptoms of dementia (BPSD) of persons with dementia (PWD), care burden and family‐to‐work conflict (FWC) of employed family caregivers. Method: A cross‐sectional study was carried out with employed adult daughter or son (or in‐law) caregivers for PWD from two rural cities in Japan. FWC, care burden and the degree of BPSD were evaluated by the Survey Work‐Home Interaction‐NijmeGen, Zarit Burden Scale‐Short Version and Dementia Behavior Disturbance Scale, respectively. Of the 200 questionnaires distributed, 130 were returned. A total of 53 respondents were not employed, and seven questionnaires had missing data for demographic variables, Survey Work‐Home Interaction‐NijmeGen, Zarit Burden Scale‐Short Version or Dementia Behavior Disturbance Scale. Thus, complete data from 70 respondents were analyzed through structural equation modeling. Results: The mean age of employed family caregivers was 56 years, and 34 (48.5%) were men. The mean age of PWD was 84 years, and there were 68 (68.6%) men. The path model with a good fit was shown (root mean square error of approximation 0.136, comparative fit index 0.960 and goodness of fit index 0.965). The path model showed that BPSD affected FWC, and that the association was partially mediated by care burden. Conclusions: The results show that a decrease in not only care burden, but also BPSD, of PWD is important for employed family caregivers to reduce their FWC and maintain their work–life balance. 

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Multifactorial Examination of Caregiver Burden in a National Sample of Family and Unpaid Caregivers

OBJECTIVES To examine factors associated with caregiver burden from a multifactorial perspective by examining caregiver and care recipient characteristics and a full range of caregiving tasks. DESIGN Nationally representative surveys of community‐dwelling older adults and their family caregivers residing in the United States. SETTING 2011 National Health and Aging Trends Study and National Study of Caregiving. PARTICIPANTS Community‐dwelling older adults and their family caregivers. MEASUREMENTS Caregiver burden, comprising emotional, physical, and financial difficulties associated with caregiving. RESULTS: An estimated 14.9 million caregivers assisted 7.6 million care recipients. More than half of caregivers reported burden related to caregiving. In a multivariable regression model, caregivers who assisted with more activities of daily living and instrumental activities of daily living, health management tasks, and health system logistics were more likely to experience burden, as were female caregivers, adult child caregivers, caregivers in poor health, caregivers with anxiety symptoms, and those using respite care. Dementia was the only care recipient characteristic associated with burden. CONCLUSION: Caregiver characteristics and provision of caregiving tasks determine caregiver burden more than care recipient characteristics. Absence of an association between type of a care recipient's chronic conditions and burden, except for dementia, suggests that the tasks that caregivers who assist older adults with a variety of health conditions undertake shape the experience of caregiving. 

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Does improvement in symptoms and quality of life in chronic schizophrenia reduce family caregiver burden?

The longitudinal association of changes in clinical status among adults with schizophrenia and changes in family caregiver burden has not been demonstrated. Using data from the NIMH-funded CATIE schizophrenia trial (n = 446 family caregivers), we examined the association of changes in patient symptoms and quality of life with changes in measures of family caregiver burden. Clinical changes in patient symptoms and quality of life were not significantly associated with changes in family caregiver burden. The weak association likely reflects that small clinical changes in chronically ill adults are insufficient to affect long established experiences of burden.

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Years of caregiving for chronically ill and disabled family members is not associated with telomere length in the Philippines

Background Caring for chronically disabled family members is a stressful experience. In turn, psychosocial stress is linked to premature aging. Telomere length (TL) is a plastic genetic trait that is a biomarker of aging, and a possible mechanism linking psychosocial stress and accelerated aging. Methods TL was measured using qPCR method from blood samples in 1233 Filipino adults from Cebu, Philippines. Caregiving was measured as chronicity of care, or the sum total number of years an individual was the primary caregiver for any household member with a chronic illness or disability. Linear regression models were used to test for associations between chronicity of care and TL. Interaction terms were used to test whether or not the association between chronicity of care and TL differed by sex, age, and relationship to the caregiver. Specific statistical designs were publicly pre-registered before analysis began. Results Chronicity of care was not associated with TL. Neither did we find any evidence for caregiving varying in its effect on TL by caregiver sex, age, or relationship to the chronically ill/disabled. Conclusions We found no evidence of an association between chronicity of care and TL. This result coupled with a recent study of a similarly sized cohort suggests that previous significant results linking caregiving and TL may be due to very particular types of caregiving populations or are possibly artifacts of small sample sizes. 

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Caregivers of older adults with dementia and multiple chronic conditions: Exploring their experiences with significant changes

Family caregiving is considered a social transition as changes in the health of the care recipient create a process of transition for the caregiver when they are more vulnerable to threats to their own health. Family and friend caregivers take on many responsibilities and experience high levels of burden when caring for community-dwelling older adults living with dementia and multiple chronic conditions. However, little is known about the changes they experience in their caring roles or how they cope with these changes. This qualitative descriptive study was part of a larger mixed methods randomized controlled trial evaluating a web-based caregiver support toolkit. Multiple semi-structured phone interviews were conducted with caregivers of older adults with dementia and multiple chronic conditions. Content analysis was used to generate thematic descriptions. Six themes were generated and grouped into two categories. Significant changes experienced by caregivers are described by the following themes: 'everything falls on you - all of the responsibilities,' 'too many feelings' and 'no time for me.' The themes describing how caregivers coped with these changes include: seeking support, self-caring, and adapting their caregiving approach. Study results indicate that caregivers of older adults with dementia and multiple chronic conditions experienced many changes in their caregiving journey resulting in increasing complexity as they tended to the care recipients' declining health and well-being. These caregivers used several creative strategies to cope with these changes. Health care providers should consider both the caregiver and care recipient as clients in the circle of care, and facilitate their linkage with health and community support services to help address the increasing complexity of care needs.

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An Examination of a Simplified Stroke Rehabilitation Program for Reducing Family Caregiver's Burden for Stroke Patients in Rural China

With stroke being one of the leading causes of disability worldwide, families and social systems may face strain as they adjust to a caregiving role. This strain may be amplified in family systems living in rural areas due to limited access to resources. Thus, it is important for helping professionals such as couple, marriage, and family therapists to understand what facets of this disability are linked with caregiver strain as well as to explore and understand various interventions that may ease caregiver burden. Using existing data from 177 pairs of stroke patients and their family caregivers in rural Mainland China, the present study utilized a moderation analysis to examine (1) the association between stroke patient physical functioning, patient mental health, and their family caregiver burden and (2) how a developed patient rehabilitation intervention program for caregivers moderated the association between patient physical functioning as well as mental health and caregiver burden 6-month post intervention. Results suggested that better patient physical functioning were related to lower levels of caregiver burden (b = − 1.418, p <.001, β = − 0.33). However, the developed rehabilitation intervention program did not significantly moderate the association between stroke patient physical functioning as well as mental health and caregiver burden. These findings provide insight into correlates of stroke patients' caregiver burden in rural China. Development of more effective rehabilitation programs and interventions for stroke patients and their family caregivers as well how couple, marriage, and family therapists may be uniquely qualified to contribute to such interventions is discussed.

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Caregiver burden and quality of life 2 years after attendance at a memory clinic

Objectives: We aimed to describe (1) the burden and health-related quality of life (HRQL) of informal caregivers of new patients attending a memory assessment service (MAS), (2) changes in these outcomes over 2 years, and (3) satisfaction with services.; Methods: Informal caregivers of patients attending one of 73 MASs throughout England completed questionnaires at the patient's first appointment, and 6 and 12 months later. Participants from 30 of these MASs were also followed up at 24 months. Questionnaires covered caregivers' sociodemographic characteristics, Zarit Burden Interview, EQ-5D-3L, and satisfaction with services. We used multivariable linear regression to assess relationships between burden, HRQL, and caregiver and patient characteristics.; Results: Of 1020 caregivers at baseline, 569 were followed up at 6 months, 452 at 12 months, and 187 at 24 months. There was a small increase in caregiver burden over 2 years (effect size 0.30 SD). These changes were not associated with most caregiver or patient characteristics, except socio-economic deprivation, which was associated with larger increases in burden at 2 years. Caregivers' HRQL was weakly associated with burden and showed a small reduction over time (0.2 SD). Most caregivers were satisfied with services, but caregivers who were not satisfied with the services they received reported greater increases in burden.; Conclusions: Increases in caregiver burden and reductions in HRQL appear to be small over the first 2 years after attending a MAS. However, the longer term impact on caregivers and those they care for needs investigating, as do strategies to reduce their burden.

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Influence of caregiver burden on well-being of family member caregivers of older adults

Background: Caregiving to older adults is one of the most important social issues associated with aging. While caregiving provides a suitable care and supportive environment for older adults, changes in the lives of caregiving family members also affect their health. The aim of this study was to examine the effect of care burden on the well-being of family members providing care for older adults.; Methods: The study used a cross-sectional design. The study sample included 363 family caregivers of older adults. Socio-demographic questionnaire form, Burden Interview and Caregiver Well-Being Scale were used as data collection tools. Multiple linear regression analysis was performed to explore the predictors of well-being in the family caregivers of older adults.; Results: The caregiver burden mean score was 32.63 ± 15.72 and Caregiver Well-Being Mean score was 159.38 ± 24.55. Caregiver burden, perceived health status of the older adults, marital status, perceived health status of caregiver and social support of caregiver were found to be statistically significant predictors of well-being in family member caregivers of older adults. Caregiver burden level was found to be the strongest predictor of well-being in the family caregivers of older adults.; Conclusion: Results showed that caregiver burden had an important effect on well-being of the caregiver. For this reason caregiver burden should be considered during interventions for improving well-being in family caregivers of older adults. Findings of our study revealed the necessity of showing special attention to caregivers by healthcare professionals and the importance of conducting interventional studies that aim to reduce caregiver burden in order to promote well-being.

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Predictors and moderators of burden of care and emotional distress in first-episode psychosis caregivers: results from the GET UP pragmatic cluster randomised controlled trial

Aims First-episode psychosis (FEP) is a major life event and can have an adverse impact on the diagnosed individual and their families. The importance of intervening early and providing optimal treatments is widely acknowledged. In comparison to patient groups, literature is scarce on identifying treatment predictors and moderators of caregiver outcomes. This study aimed to identify pre-treatment characteristics predicting and/or moderating carer outcomes, based on data from a multi-element psychosocial intervention to FEP patients and carers (GET-UP PIANO trial).; Methods: Carer demography, type of family relationship, patient contact hours, pre-treatment carer burden, patient perceptions of parental caregiving and expressed emotion (EE) were selected, a priori, as potential predictors/moderators of carer burden and emotional distress at 9 months post treatment. Outcomes were analysed separately in mixed-effects random regression models.; Results: Analyses were performed on 260 carers. Only patient perceptions of early maternal criticism predicted reports of lower carer burden at follow-up. However, multiple imputation analysis failed to confirm this result. For treatment moderators: higher levels of carer burden at baseline yielded greater reductions in carer emotional distress at follow-up in the experimental group compared with treatment as usual (TAU). Higher levels of perceived EE moderated greater reductions in carer reports of tension in experimental group, compared with TAU, at follow-up. In younger caregivers (<51 years old), there were greater reductions in levels of worry during the baseline to follow-up period, within the experimental group compared with TAU.; Conclusion: The study failed to identify significant treatment predictors of FEP carer outcomes. However, our preliminary findings suggest that optimal treatment outcomes for carers at first episode might be moderated by younger carer age, and carers reporting higher baseline levels of burden, and where patients perceive higher levels of negative effect from caregivers.

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Informal caregivers' well-being and care recipients' quality of life and community reintegration - findings from a stroke survivor sample

Background: Stroke is highly debilitating and requires long-term care. Informal caregivers of stroke survivors play important roles in stroke rehabilitation. Caring for stroke survivors can negatively affect the caregivers' well-being and may adversely impact on their caregiving quality and subsequently on stroke survivors' well-being. There seems to be a dearth of research on the relationships between caregivers' and stroke survivors' well-being.; Aims and Objectives: This study was designed to determine the relationships among informal caregivers' burden and quality of life (QOL) and stroke survivors' QOL and community reintegration.; Methods: This ethically certified cross-sectional survey involved 82 stroke survivors (mean age = 60.48 ± 11.13 years) and their 82 primary caregivers (mean age = 36.13 ± 13.69 years) consecutively recruited from seven conveniently sampled tertiary hospitals in Nigeria. Caregivers Strain Index, Igbo-culture adapted Maleka Stroke Community Reintegration Measure and Short-Form 36-item Health Survey questionnaires were used to assess the caregivers' burden, survivors' community reintegration and QOL (of survivors and caregivers), respectively. Data were analysed using descriptive statistics, Spearman rank, Mann-Whitney U and Kruskal-Wallis tests at alpha level of 0.05.; Results: The mean stroke survivors' community reintegration and QOL were 34.05 ± 21.54% and 34.93 ± 16 ± 49%, respectively. The mean caregivers' QOL and burden scores were 74.49 ± 12.61% and 9.13 ± 3.18, respectively. About 80.5% of the caregivers experienced significant burden. Stroke survivors' QOL and community reintegration, and caregivers' QOL and burden significantly correlated with one another (p < 0.05). Poststroke duration, survivor-caregiver cohabitation duration, survivors' community-dwelling duration and daily care-giving hours significantly correlated with each of stroke survivors' community reintegration and QOL, and caregivers' burden and QOL (p < 0.05).; Conclusions: Stroke survivors' community reintegration and QOL were poor while caregivers' had moderate QOL and high prevalence of significant burden. Significant correlations exist between caregivers' well-being and stroke survivors' QOL and community reintegration. Interventions targeted at reducing caregivers' burden may help improve both caregivers and survivors' well-being.

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Current Advances in Palliative & Hospice Care: Problems and Needs of Relatives and Family Caregivers During Palliative and Hospice Care-An Overview of Current Literature

Palliative and hospice care aims to improve quality of life of patients' relatives, but still little is known about their specific problems and needs. We present a comprehensive literature update. Narrative review to present an expert overview of peer-reviewed, English-written original research publications and reviews on psychosocial and existential problems, supportive needs as well as interventions for relatives during the patients' disease trajectory published between January 2017 and November 2018. A total of 64 publications were included. Relatives report high rates of psychological and existential distress, burden and psychological morbidity during the total disease trajectory of the patient. In addition, relatives report an alarmingly high number of unmet needs with information being the central issue. Relatives' problems and needs are part of complex systems influenced by various socio-demographic factors and patient⁻relatives-interactions and dependency between different psychological phenomena. First support interventions for relatives during disease trajectory have proven feasible and secondary data from randomized studies suggest beneficial effects of providing early palliative care also for relatives. Relatives should be addressed to a still larger extent in the daily practice of palliative and hospice care, thus further research to reveal more detailed systematic information is needed to improve relatives' psychological burden and quality of life.

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Economic and objective burden of caregiving on informal caregivers of patients with systemic vasculitis

Introduction: Systemic vasculitis (SV) is associated with substantial economic impact to patients and the healthcare system but little is known about the burden of SV on informal caregivers. We evaluated the objective caregiving burden experienced by informal caregivers of patients with SV.; Methods: We surveyed adult patients and their informal caregivers on the physical, emotional, social and economic impacts of SV. We asked patients about the extent to which they felt they were a burden to their identified caregivers. Caregivers reported the direct and indirect economic impact of SV, including employment disturbance, income loss and relative time investment of caregiving for their care recipient's SV. We used the Inventory of Caregiving Activities Questionnaire to compute the objective caregiving burden.; Results: We analysed data from 68 SV patient-caregiver dyads. Patients reported moderate levels of subjective burden to their caregivers. Over one-quarter of caregivers reported ever having lost some income owing to caregiving for SV. Caregivers reported spending a median of 19 weekly hours on various caregiving tasks, including a median 17 weekly hours on household activities.; Discussion: Given the extended hours that caregivers spend caring for their care recipient, intervention targets should aim to reduce caregiver burnout in the SV population. Future research should examine the relationship between the objective burden of caregiving for SV and the overall physical health, mental health and quality of life of caregivers.

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Roles of Family Caregivers and Perceived Burden When Caring for Hospitalized Adult Cancer Patients: Perspective From a Low-Income Country

Background: Family caregivers (FCGs) of adult cancer patients (ACPs) are typically involved in the entire trajectory of cancer disease, from diagnosis to survivorship or end of life. In developing countries, FCGs are more intensely involved in the process of providing care to the hospitalized ACPs because of lack of adequate cancer care resources. Active performance of tasks to meet the needs of ACPs in the hospital setting is likely to elicit significant caregiver burden.; Objective: The aim of this study was to explore the tasks performed and the caregiver burden experienced by FCGs of hospitalized ACPs in a sub-Saharan country.; Methods: A cross-sectional descriptive design was used to collect data from 168 FCGs of ACPs. The Caregiver Burden Scale was used to measure burden.; Results: The most common cancer diagnosis in male and female ACPs was Kaposi's sarcoma (32.1%) and breast cancer (37.9%), respectively. The tasks regularly performed by most FCGs for the ACPs were providing emotional support (79.8%), feeding (68.5%), transporting to other appointments (62.5%), preparing meals (55%), and giving medications (46.4%). Most FCGs (75%) were experiencing severe or very severe general caregiver burden. The dimensions of caregiver burden that were most severely impacted were general strain (70.6%), disappointment (85.8%), and isolation (72%). Predictors of caregiver burden are reported.; Conclusion: Family caregivers of hospitalized ACPs experience severe caregiver burden. The main forms of burden experienced were general strain, disappointment, and isolation.; Implications For Practice: Cancer care services in developing countries should be strengthened with services that address FCGs' emotional needs and human resources to curtail the strain imposed on FCGs.

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Do interventions that include education on dementia progression improve knowledge, mental health and burden of family carers? A systematic review

Background and Aim: The European Association of Palliative Care recommends that family carers need education on the progression of dementia. This systematic review aimed to explore whether interventions incorporating education regarding the progressive nature of dementia increased carers' understanding of dementia and improved mental health and burden.; Method: MEDLINE, PsycINFO and CINAHL were searched to April 2018. Randomised controlled trials with samples of family carers of someone with dementia were eligible. Included interventions involved a component aimed to increase the carer's understanding of the progression of dementia. Outcomes of interest included: knowledge of dementia, depression, burden and pre-death grief.; Results: Searches identified 3221 unique citations of which 11 studies were eligible for review. Interventions ranged from 4 to 16 sessions of which 1 to 3 sessions focused on the progression of dementia. Knowledge: Two studies evaluated carers' knowledge of dementia. One found no difference between the trial arms immediately after the intervention or three months later. The second found a significant intervention effect at the end of the intervention but not at three-month follow-up. Depression: Seven studies evaluated intervention effects on depression. Meta-analysis of three trials showed significant differences in mean follow-up scores favouring intervention over control. The remaining four studies did not show differences in depression between intervention and control groups. Burden: Nine studies evaluated burden and were examined in two meta-analyses (mean scores at follow-up and mean change scores from baseline to follow-up), neither of which found a benefit for intervention over control. Using the grading of recommendations assessment, development and evaluation system, we judged the quality of evidence to be very low for depression and low for burden, knowledge and pre-death grief, reducing our confidence in any of the effect estimates.; Conclusion: The evidence was not sufficient to support or refute the effectiveness of education on progression of dementia on carers' knowledge and mental health.

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Physical, emotional and social burden of elderly patients' informal caregivers

Objective: Assess the burden and identify the burden-related factors in home-baded informal caregivers of bedridden elderly attended by the Family Health Strategy. Methods: Analytical, cross-sectional study involving 208 informal caregivers. The data were collected between February and July 2017 by applying the characterization script and the Informal Caregiver Burden Assessment Questionnaire. For analysis purposes, the Statistical Package for the Social Science, version 20.0 was used. Descriptive (central trend and dispersion, absolute and relative frequency measures) and inferential (Mann-Whitney and Kruskal-Wallis tests; Spearman correlation test) statistics were applied. Results: The mean total burden score was 71.1 (±26.3). A statistically significant difference was observed in the total burden and domain scores according to the variables: marital status of caregiver, degree of kinship with the elderly and all clinical variables of the caregivers. A positive correlation was registered between the burden and the caregiver's age and between the burden and number of daily hours spent on care. Conclusion: The burden was higher for the partners, caregivers with comorbidities, pain related to the activity performed and caregivers who considered their health as regular.

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Interventions to address burden among family caregivers of persons aging with TBI: A scoping review

Purpose: To capture the scope of literature exploring interventions for caregivers of aging persons with TBI. Methods: A scoping review of peer reviewed literature was conducted in two phases. Phase I: Searching seven databases, two independent raters screened articles using a set of predetermined criteria. Included articles were reviewed, and categorized according to common themes. Phase II: Five stakeholders were engaged in a consultation. A content analysis was performed by extracting statements from each interview using an inductive strategy, and organizing each into themes. Findings: A total of 11 articles were included in the final analysis. Inter-rater reliability was assessed at both the title and abstract search [98.8% agreement; k = 0.3425 (95% CI,.246 to.439), p < .05]; and the full-text review [83% agreement; k = 0.542 (95% CI, 0.340 to 0.745), p < .05] phases. Seven articles identified potential interventions, and four identified and evaluated an intervention. Interventions targeted subjective burden (n = 4) and objective burden (n = 4), with caregiver knowledge and skill development (n = 3) classified as a sub-category of objective burden. Stakeholders overwhelmingly emphasized the need for interventions to reduce objective burden. Implications: Included articles were primarily composed of levels six and seven evidence, suggesting that this literature is in an early stage of development. Future research should emphasize the development and evaluation of interventions to reduce objective burden.

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Beyond care burden: associations between positive psychological appraisals and well-being among informal caregivers in Europe

Purpose: The burden of caring for a family member or friend can have a negative impact on caregiver health and well-being, yet caring can also have positive consequences. Understanding the factors that may enhance caregiver well-being is merited.; Methods: We used data gathered from the European Quality of Life Survey (EQLS). Using complete case analysis followed by multiple imputation analysis, a series of multilevel regression models were developed to systematically explore the role of three distinct blocks of factors in predicting caregiver well-being as measured by the WHO-5 well-being index: (1) sociodemographic and health factors, (2) care and burden-related factors, and (3) psychological and social appraisals. Differences between frequent caregivers and the general population were also compared on all measures.; Results: 36,908 respondents took part in EQLS, with 4171 (11%) identifying as frequent carers. While frequent caregivers reported lower well-being compared to the remaining population, most were happy with the amount of time spent caring. Our model explained approximately 32% of variance in well-being scores. After examining the role of known risk factors, all positive psychological appraisals were associated with higher well-being (p < .001). In order of magnitude these were optimism, perceived autonomy, sense of purpose, resilience, and perceived levels of social inclusion. Self-rated health was the strongest predictor of well-being while female carers and those with high levels of various burden measures reported lower well-being.; Conclusions: Findings suggest that caregiver well-being is influenced by more than simply the burden of care. As well as attempting to reduce burden, interventions aimed at supporting caregivers could focus on fostering more positive appraisals to enhance well-being in this group.

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Living on the edge: Family caregivers' experiences of caring for post-stroke family members in China: A qualitative study

Background: Globally, one-third of the 15 million people with stroke suffer permanent physical, cognitive, and emotional impairment. Because of traditional Chinese culture and the limited development of the primary healthcare system, most stroke survivors are cared for and live with their family after hospital discharge. However, previous literature shows a lack of qualitative studies on family caregivers' experience of caring for their relatives in China.; Objectives: The aim of this study was to explore the experience of family caregivers taking care of stroke survivors in China.; Methods: An explorative design was used wherein qualitative semi-structured interviews were conducted with family caregivers in China. Family caregivers were selected from one city and three communities using a purposive sampling method until no new data were generated (n = 26). A thematic analysis was used for the data analysis in this study.; Findings: Family caregivers' experience was described as living on the edge, which pulled their lives in multiple directions, created an unstable situation, and reduced their well-being and health. The participants believed they had total responsibility and felt that this was expected from both themselves and society. Little external understanding and insufficient support was emphasised, resulting in the caregivers feeling all alone, drained by caring, and like prisoners in their own lives. The family caregivers had to face all of the family events and make all of the decisions by themselves. They expressed love for their family members with stroke, but this was often overshadowed by feelings of sadness, depression, sensitivity, and anger. This resulted in an inability to see how things could improve and in the family caregivers being uncertain about the future.; Conclusion: All of these findings increased understanding and added knowledge of this topic that has been seldom studied in China. Healthcare authorities and professionals should recognise and understand the lives and situations of family caregivers since their relatives had a stroke to further identify their difficulties and needs. Appropriate and effective support, both from government and society, should be planned and implemented for family caregivers to relieve them from caring for their relatives with stroke and maintaining the quality of their own lives.

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Patients and informal caregivers' experiences of burden of treatment in lung cancer and chronic obstructive pulmonary disease (COPD): a systematic review and synthesis of qualitative research

Objective: To identify, characterise and explain common and specific features of the experience of treatment burden in relation to patients living with lung cancer or chronic obstructive pulmonary disease (COPD) and their informal caregivers.; Design: Systematic review and interpretative synthesis of primary qualitative studies. Papers were analysed using constant comparison and directed qualitative content analysis.; Data Sources: CINAHL, EMBASE, MEDLINE, PsychINFO, Scopus and Web of Science searched from January 2006 to December 2015.; Eligibility Criteria For Selecting Studies: Primary qualitative studies in English where participants were patients with lung cancer or COPD and/or their informal caregivers, aged >18 years that contain descriptions of experiences of interacting with health or social care in Europe, North America and Australia.; Results: We identified 127 articles with 1769 patients and 491 informal caregivers. Patients, informal caregivers and healthcare professionals (HCPs) acknowledged lung cancer's existential threat. Managing treatment workload was a priority in this condition, characterised by a short illness trajectory. Treatment workload was generally well supported by an immediacy of access to healthcare systems and a clear treatment pathway. Conversely, patients, informal caregivers and HCPs typically did not recognise or understand COPD. Treatment workload was balanced with the demands of everyday life throughout a characteristically long illness trajectory. Consequently, treatment workload was complicated by difficulties of access to, and navigation of, healthcare systems, and a fragmented treatment pathway. In both conditions, patients' capacity to manage workload was enhanced by the support of family and friends, peers and HCPs and diminished by illness/smoking-related stigma and social isolation.; Conclusion: This interpretative synthesis has affirmed significant differences in treatment workload between lung cancer and COPD. It has demonstrated the importance of the capacity patients have to manage their workload in both conditions. This suggests a workload which exceeds capacity may be a primary driver of treatment burden.; Prospero Registration Number: CRD42016048191.

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Family resilience and psychological well-being among Chinese breast cancer survivors and their caregivers

Walsh's family resilience theory indicated that families could foster resilient outcomes among their members when they are facing changes or crises. However, little is known about family resilience and psychological well-being among Chinese breast cancer survivors and their caregivers. Therefore, this study aimed to examine the direct and indirect relationships between family resilience, breast cancer survivors' post-traumatic growth (PTG), quality of life (QOL), and their principal caregivers' caregiver burden. A total of 108 breast cancer survivors/principal caregivers pairs completed a cross-sectional questionnaire survey in a comprehensive cancer of a public hospital in Shandong Province, China. The structural equation modelling (SEM) results showed that family resilience had direct and indirect effects on QOL and caregiver burden, and it was positively related to the PTG of the survivors. The survivors' PTG was positively related to their QOL, and their QOL was negatively associated with caregiver burden. Therefore, a better understanding of how family resilience contributes to PTG and QOL of the survivors and caregiver burden could help clinicians tailor interventions to enhance interventions aimed at improving both survivors' and caregivers' well-being.

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Finding fault: Criticism as a care management strategy and its impact on outcomes for dementia caregivers

Background: Despite a large literature on the stress process, little attention has focused on how caregivers for persons living with dementia (PLWDs) provide care and how this may impact care outcomes. Criticism is a management strategy caregivers may use to respond to behavioral symptoms. We consider whether criticism is associated with caregivers' mental health and service utilization. Methods: Data are drawn from the Advancing Caregiver Training intervention study including 256 informal caregivers living with a PLWD. In multiple linear regressions controlling for caregivers' demographics and PLWDs' clinical factors, we consider criticism (criticism subscale of the Dementia Management Strategies Scale) as a predictor of caregiver burden, depressive symptoms, desire to institutionalize the PLWD, level of frustration with care, and the number of home-based, social, and health services utilized.  Results: On average, 15% of the sample sometimes reported using criticism as a management strategy to manage the challenges of care. Greater use of criticism was associated with significantly more caregiver burden (β = 0.26, P < 0.001) and frustration with caregiving (β = 0.66, P < 0.001), but not depressive symptoms or a desire to institutionalize the PLWD. Criticism was also associated with significantly greater utilization of home-based (β = 0.14, P < 0.05) and social services (β = 0.15, P < 0.05), but not health care services. Conclusion: Criticism appears to be used by more burdened and frustrated caregivers. The association of criticism with social and home-based services potentially reflects a need for greater support among this group of caregivers. Behavioral interventions that can help caregivers manage behavioral symptoms with positive, empirically validated strategies may be helpful.

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Longitudinal Outcomes Among Family Caregivers of Power Mobility Users

Objective: To examine the change over 1 year in the burden, wheelchair skills, social support, social participation, and mental health of family caregivers providing assistance to older adult powered wheelchair users.; Design: Longitudinal study.; Setting: Community.; Participants: Participants (N=35) included family caregivers (mean age ± SD=63.7±10.2y) who provided at least 2 hours of general care per week for a powered wheelchair user.; Intervention: Not applicable.; Main Outcome Measures: The Power Mobility Caregiver Assistive Technology Outcome Measure (frequency of care and subjective burden), the Wheelchair Skills Test Questionnaire for caregivers (wheelchair skills), the Interpersonal Support Evaluation List-6 (social support), the Late-Life Function and Disability Instrument (social participation), the Hospital Anxiety and Depression Scale (mental health). Measures were taken at baseline, 1, 3, 6, and 12 months. Descriptive statistics were calculated, and a linear mixed model was used to assess changes over time in the outcomes.; Results: The results showed that the caregivers helped on average with 3 powered wheelchair-related activities and 10 other caregiving activities. They also experienced moderate subjective burden and social participation and were within the normal range for depression and anxiety. Moreover, those outcomes remained stable over the 1-year study period. However, the wheelchair skills scores showed significant changes over time, as the scores improved during the first 6 months of the study.; Conclusion: Given that previous research indicated that subjective burden tends to decline over time among caregivers, the findings of stability in this study may reflect increasing needs among this population of caregivers, who may benefit from additional support and interventions. This would need further consideration.

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Do Caregiver Characteristics Affect Caregiver Burden Differently in Different Countries?

The relationships between caregiver burden as measured with the Burden Scale for Family Caregivers–short form and 6 characteristics of caregivers caring for patients with dementia were investigated for caregivers from England (n = 36), Finland (n = 42), and Greece (n = 46) using survey data. In all 3 countries, caregiver burden increases with physical problems of the caregiver, emotional problems of the caregiver, and weekly hours of care. Hence, in all 3 countries, special support for informal care is required when these characteristics are at high levels. When the caregiver is a spouse or long-term partner of the person with dementia, lives in the same house as this person, or spends fewer than 20 h/wk for other duties than care, this is associated with less caregiver burden in England but with more caregiver burden in Greece. Accordingly, special support is required for Greek caregivers with these characteristics, but the opposite is true for English caregivers.

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Caring by telecare? A hermeneutic study of experiences among older adults and their family caregivers

Aims and Objectives: To obtain a deeper understanding of the persistent use of telecare for older adults and their family caregivers.; Background: Telecare is seen as part of the solution in home care services for ageing in place. Previous studies have shown that telecare is a complex intervention, and there is still a poor understanding of older adults' and their family caregivers' experience with the use of telecare.; Design: This study used a qualitative hermeneutic research approach.; Method: Interviews were conducted with 18 older adults and follow-up interviews were conducted with 15 participants after 5-6 months of use. In addition, interviews were conducted with seven close family caregivers. The COREQ checklist was used.; Results: The older adults expressed increased safety, security and independence. Although some of them experienced challenges, they continued to use the services. Furthermore, the findings revealed needs that telecare could not cover. Family caregivers reported that telecare eased their concern for a time. However, they felt increased responsibility which led to ambivalent feelings between wanting to comply with the older adults' desire to live at home and the stress and concern this caused.; Conclusion: Telecare does improve care offered by home care services. However, it must be considered in the context of assistance and other measures and be provided in response to each individual's specific needs. Family caregivers may benefit from telecare, but telecare may also add to their care burden.; Relevance To Clinical Practice: There is a need for increased knowledge and information about telecare and for follow-up from home care services. Family caregivers are important for promoting sustainable use, but a support system and better cooperation with home care services is needed.

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Caring for Patients With a Tracheostomy at Home: A Descriptive, Cross-sectional Study to Evaluate Health Care Practices and Caregiver Burden

In numerous countries, lay (family) caregivers are the primary providers of care for community-dwelling patients with a tracheostomy.; Purpose: The purpose of this descriptive study was to determine health care practices and the burden on family caregivers for patients with a tracheostomy living at home.; Methods: The research population included 50 caregivers (average age 55.60 ± 1.39 years; 25 [50%] female) who provided care to 50 patients (average age 63.50 ± 1.72 years; 35 [70%] male) who were discharged from the otorhinolaryngology clinic of an education and research hospital in Turkey. Patient and caregiver characteristic data and tracheostomy care practices were collected via face-to-face interviews between caregivers and researchers using paper-and-pencil questionnaires. The 18-item Zarit Caregiver Burden Interview also was completed; responses to statements are rated on a scale of 0-4, where 0 = never, 1 = rarely, 2 = sometimes, 3 = often, and 4 = almost always. Total scale scores range from 0 to 88; higher scores indicate greater burden. Data were transferred into a statistical analysis program.; Results: The mean score for the Zarit Caregiver Burden Scale was 42.44 ± 1.93, inferring caregivers were moderately burdened. Caregiver burden scores were significantly higher among female caregivers, caregivers without health insurance, caregivers requiring help, caregivers with chronic illness, more daily care time (hours), and duration of total care (months). Patient burden scores were significantly higher among persons requiring provision of daily nebulization and oxygen therapy, external cannula cleaning, and daily patient care.; Conclusion: This study illuminates the burdens faced by lay/family caregivers of patients with a tracheostomy and identifies for community health clinicians the challenges, care requirements at home, and burden of family caregivers that must be addressed.

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You never walk alone: An exploratory study of the needs and burden of an informal care group

Little is known about the dynamics of a group of people giving informal care together. The aim of this study was to investigate the characteristics of an informal care group, the obstacles the informal care group experiences, the needs and desires they have and how the informal care group can be supported by general practitioners (GPs) and other professionals. Nine informal care groups were interviewed based on a questionnaire that was preapproved by the six Flemish official informal caregiver organisations. The results were analysed using open coding. A survey was conducted among 137 caregivers who were part of a group. Univariate analysis was performed. Informal care group usually consist of close relatives of the patient, with often the partner of the patient as the main caregiver. The size of the informal care group depends on the size of the family. If there are more caregivers in a group, the perceived burden of the individual caregiver decreases. The support of the other caregivers in the group increases capacity. The cooperation and agreements are often spontaneously organised and few problems are reported. There is a large variation in the expectations of support from the general practitioner, ranging from availability in emergencies to information about the possibilities of formal home care. This study depicts a positive image of the informal care group. Being part of a caregiver group both decreases burden and increases capacity. Informal care groups usually function well without a need for formal agreements within the group, and they rarely need a third party to coordinate with them or intervene.

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The effect of patient care education on burden of care and the quality of life of caregivers of stroke patients

Background: Care for stroke patients at home is a very complicated and tough activity.; Objective: The study was conducted to examine the effect of patient care education on burden of care and quality of life of caregivers of stroke patients.; Materials and methods: The study was an educational trial conducted on 100 caregivers of the stroke patients in Al-Zahra educational hospital, Isfahan, Iran. The intervention group received some training to empower caregivers in family-oriented care in form of an educational counseling program. Data were collected and analyzed using the questionnaires, including demographic, quality of life Short Form-36, and Zarit burden of care questionnaires.; Results: The mean ages of caregivers were 48.52 years in the intervention and 45.14 years in the control groups. The results indicated significant differences in mean of quality of life and burden of care in the caregivers of the intervention group after intervention (P<0.01), which was insignificant in the control group. The average burden on the caregivers of both groups was significantly associated with health status, economic status, marital status, the number of children, care hours, care days, and familial relationship of the caregivers with the patients (P<0.01) before intervention. In addition, quality of life of both groups was significantly related to their health status (P<0.01) before intervention.; Conclusion: Patient care education reduced the burden of care and improved quality of life of the caregivers of stroke patients. Thus, to reduce the complications of caring for stroke patients, family education should be the priority of nursing and discharging procedures.

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Family Caregivers' Perspectives for the Effect of Social Support on their Care Burden and Quality of Life: A Mixed-Method Study in Rural and Sub-Urban Central Japan

Japan has adopted community-based integrated long-term care, which has shifted the burden of care from institutions to the home. However, family caregivers have received less attention compared with care recipients. Many family caregivers are also older adults, and it is important that caregivers receive appropriate support to alleviate the burden of care. In rural and sub-urban area with limited resources compared to urban area, it is necessary to know which support to be prioritized. Therefore, this study aimed to understand family caregivers' perceptions of social support, the type and source of support which were considered important, and how it affected their caregiving burden and quality of life (QOL). We conducted a convergent mixed-method study with 174 primary family caregivers of older adults receiving home care in rural and suburb area of Central Japan. The mixed-method approach enabled qualitative data to complement quantitative results. Strong family support and higher education had positive effects on QOL, while higher caregiving burden and longer duration of care had negative effects on QOL. Provision of tangible support from family and healthcare professionals was central in reducing caregiving burden and improving caregivers' QOL. Support from distant relatives or neighbors, which was deemed inappropriate by caregivers, had a negative effect on caregivers' emotional status. In conclusion, family caregivers perceived support positively, but the effects depended on who provided support. While tangible support from close family and professionals was perceived positively, support from neighbors or distant relatives should consider caregivers' needs and condition to avoid a negative impact.

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A Qualitative Study on Cancer Care Burden: Experiences of Iranian Family Caregivers

The aim of this study was to explore the experiences of Iranian family caregivers with regard to the burden of caregiving. This is in the context of illuminating and identifying the experiences of family members from different contextual perspectives. In this qualitative study, purposive sampling was conducted in 2016. Data were collected using semistructured interviews and were analyzed using content analysis. Data analysis identified 4 categories and 8 subcategories: (1) burnout (physical problems and psychoemotional stress), (2) role conflict (balancing caring roles and family responsibilities; failure in professional or educational roles), (3) health system tensions (inadequate support from health professionals; ignorance of family members in health structure), and (4) social challenges of cancer (economic burden; taboo of cancer). In conclusion, nurses need to provide individualized support and counseling that address the sources of burden. This highlights the benefit of training health care professionals to provide culturally sensitive support based on family caregivers' needs and circumstances.

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A Randomized Controlled Trial of Group Psychoeducation for Carers of Persons With Borderline Personality Disorder

Carers of persons with borderline personality disorder (BPD) experience high burden. Treatment guidelines advocate involving carers in comprehensive therapy approaches. This study is a randomized controlled trial of group psychoeducation, compared to waitlist. Group psychoeducation involved 6–8 carers per group and focused on improving relationship patterns between carers and relatives with BPD, psychoeducation about the disorder, peer support and self-care, and skills to reduce burden. Carers were randomized into intervention (N = 33) or waitlist (N = 35). After 10 weeks, those in the intervention reported improvements in dyadic adjustment with their relative, greater family empowerment, and reduced expressed emotion, sustained after 12 months. There were also improvements in carers' perceptions of being able to play a more active role, such as interacting with service providers. This study demonstrates that providing structured group programs for carers can be an effective way of extending interventions to a group experiencing high burden. 

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The Perceived Caregiver Burden Among Turkish Family Caregivers Providing Care for Frail Older Adults

Purpose: The older population has reached to 8.5%, and the prevalence of frailty is reported as 39.2% in Turkey. The purpose of the study was to assess caregiver burden in families who care for frail older adults in Turkish culture.; Method: This descriptive study was conducted in Turkey between June and October 2017. Frail older adults who had no severe cognitive impairment were included. Data were measured using the Older Adult Information Form, Edmonton Frailty Scale, Caregiver Information Form, and Zarit Burden Interview.; Results: In total, 131 older person/caregiver dyads were analyzed; the Zarit Burden Interview mean score was 37.59 ± 18.20. Caregivers with less education and providing care more than 8 hours experienced a higher burden ( p < .05). The severity of frailty significantly correlated with the caregiver scores ( R = .36, p < .01).; Conclusion: The caregiver burden in Turkish family caregivers was found mild to moderate and correlated with the degree of frailty. Policymakers should focus on culture-specific formal caregiver services.

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Estimating Informal Caregiving Time from Patient EQ-5D Data: The Informal CARE Effect (iCARE) Tool

Background: Families and friends provide a considerable proportion of care for patients and elderly people. Caregiving can have substantial effects on caregivers' lives, health, and well-being. However, because clinical trials rarely assess these effects, no information on caregiver burden is available when evaluating the cost effectiveness of treatments. Objective: This study develops an algorithm for estimating caregiver time using information that is typically available in clinical trials: the EQ-5D scores of patients and their gender. Methods: Four datasets with a total of 8012 observations of dyads of caregivers and a gamma model with a log-link estimated with the Bayesian approach were used to estimate the statistical association between patient scores on the EQ-5D-3L dimensions and the numbers of hours of care provided by caregivers during the previous week. The model predicts hours of care as mean point estimates with 95% credible intervals or entire distributions. Results: Model predictions of hours of care based on the five EQ-5D dimensions ranged from 13.06 (12.7-14.5) h/week for female patients reporting no health problems but receiving informal care to 52.82 (39.38-66.26) for male patients with the highest level of problems on all EQ-5D dimensions. Conclusions: The iCARE algorithm developed in this study allows researchers who only have patient-level EQ-5D data to estimate the mean hours of informal care received per week, including a 95% Bayesian credible interval. Caregiver time can be multiplied with a monetary value for caregiving, enabling the inclusion of informal care costs in economic evaluations. We recommend using the tool for samples that fall within the confidence intervals of the characteristics of our samples: men (age range 47.0-104.2 years), women (age range 55-103 years).

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Caregiver Burden and Quality of Life in Early and Late Stages of Idiopathic Parkinson's Disease

Objective: Idiopathic Parkinson's disease (IPD) is a chronic progressive neurodegenerative movement disorder characterized by motor and non-motor symptoms that affects patients' quality of life and caregiver burden. The aim of our study was to assess the caregiver burden (CB) in early and late stages of disease and to search if there was a relationship between quality of life and CB.; Methods: A total of 74 patients who were diagnosed as having IPD by a movement disorder neurologist according to United Kingdom Brain Bank Criteria and their caregivers were randomly selected for participation the study. Staging of PD was performed by the neurologist based on the Hoehn and Yahr (H&Y) Scale. Disease severity was determined using the Unified Parkinson's Disease Rating Scale (UPDRS). CB was evaluated using the Zarit Caregiver Burden Inventory (ZCBI). The Hospital Anxiety and Depression Scale (HADS) and the Beck Depression Inventory (BDI) were used to assess anxiety and depressive symptoms in patients with IPD and their caregivers. The Short-Form Health Survey instrument (SF-36) was used to evaluate quality of life of the patients. The Mini-Mental State Examination (MMSE) was administered to patients to evaluate gross cognitive status.; Results: Seventy-four patients (male, 58.1%) were included in the study. The mean age of patients was 66.18±8.5 and the mean duration of disease was 67.23±41.8 months. According to the H&Y scale, the patients were divided into two groups; stage I-II as early stage and stage III-V as late stage. Group 1 (H&Y I-II) consisted of 40 patients, and group 2 (H&Y III-V) comprised 34 patients. The mean duration of disease and UPDRS scores were significantly higher in group 2 (p=0.003, p=0.001, respectively). Significant differences were found in group 2 according to BDI. There were significant differences between group 1 and 2 according to SF-36 subdomains such as general health, emotional role, social functioning, pain, and mental health (p=0.019, p=0.038, p=0.005, p=0.004, p=0.014, respectively). However, there were no significant differences between these two groups concerning CB.; Conclusion: Although CB was found in 35 (47.3%) caregivers in our study, we found no significant differences between the caregivers of patients with early and late-stage IPD patients. We thought that this might be due to strong family relationships and cultural dynamics in Turkey. Burden was found to be higher in depressive patients' CGs and CGs who had depressive symptoms. It is important to recognize depressive symptoms earlier to protect the relationship between the CG and the patient because the main providers of care are family members.

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Problem-solving therapy reduces subjective burden levels in caregivers of family members with mild cognitive impairment or early-stage dementia: Secondary analysis of a randomized clinical trial

Objectives: Interventions addressing burden have limited impact among long-term family caregivers. We examined whether problem-solving therapy (PST) would reduce burden levels of caregivers of individuals diagnosed with mild cognitive impairment (MCI) or early-stage dementia (AD).; Methods: Caregivers (N = 73) randomly received PST or nutritional training (NT). Burden measures were assessed over 1-year post-intervention.; Results: Relative to NT, caregivers receiving PST endorsed improved perceived burden levels over time, regardless of the type of caregiver. Distress over the care recipient's dementia-related behaviors remained low over time among MCI caregivers receiving PST, while these burden levels among MCI caregivers receiving NT rose over time. AD caregivers receiving PST endorsed reductions in these burden levels over time, while AD caregivers in the NT group endorsed higher burden levels over time.; Conclusion: PST, taught early in the caregiving trajectory, improves subjective burden levels among caregivers of family members with relatively mild cognitive deficits.

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Caregiver Burden and Work Productivity Among Japanese Working Family Caregivers of People with Dementia

Background: We examined the association between caregiver burden and work productivity (i.e., absenteeism, presenteeism, and overall work impairment) among working family caregivers of people with dementia and whether job characteristics (i.e., job demands, job control, supervisor and coworker support) moderate this association.; Methods: A cross-sectional correlational study design using a web-based questionnaire survey was conducted among 379 Japanese working family caregivers of people with dementia (105 female, age range 20-77) in May 2016, which measured caregiver burden, work productivity, care situation, job characteristics, and demographics. Caregiver burden was designated as an independent variable and each aspect of work productivity as a dependent variable in a hierarchical multiple regression analysis, adjusting for demographics. Interaction terms between caregiver burden and each job characteristic were also included in the model.; Results: Caregiver burden was significantly and positively associated with presenteeism (β = 0.219, p < 0.001) and overall work impairment (β = 0.181, p < 0.001), while the association of caregiver burden with absenteeism was not significant (β = - 0.003, p = 0.953). Interaction effects of caregiver burden × coworker support on presenteeism (β = - 0.189, p = 0.023) and overall work impairment (β = - 0.172, p = 0.034) were significant. According to simple slope analyses, caregiver burden was greater at lower levels of coworker support compared to higher levels of coworker support for both presenteeism and overall work impairment.; Conclusions: Our study suggests that higher caregiver burden is associated with a decrease in work productivity. Additionally, coworker support appears to buffer the association of caregiver burden with presenteeism and overall work impairment among working family caregivers of people with dementia.

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Caring Burden and Quality of Life of Family Caregivers in Patients Undergoing Hemodialysis: A Descriptive-Analytic Study

Background: Caring role, especially in chronic diseases, has a negative impact on the health of family caregivers and can affect their quality of life. Therefore, this study aimed to investigate the care burden and quality of life in family caregivers of hemodialysis patients and their relationship with some characteristics of caregivers and patients.; Methods: This study was conducted as a descriptive-analytic study in Isfahan from January to February 2017. Sampling was done using census. The number of participants was 254. The data gathering tools consisted of a three-part questionnaire including demographic characteristics, the Zarit questionnaire for caring burden, and SF-36 quality of life questionnaire. Data were analyzed using descriptive statistics, Pearson correlation coefficient test, Spearman's coefficient, ANOVA, and univariate general linear regression. A significant level of 5% was considered.; Results: The mean scores of the quality of life and caring burden were 30.54±9.89 and 44.98±6.82, respectively in caregivers. The age of the patient under care (P<0.001), cost of medications (P=0.008), and hours of care in 24 hours (P<0.001) had a significant relationship with care givers' quality of life. Also, univariate general linear regression revealed that care burden had a significant relationship with the quality of life (P=0.003).; Conclusion: Family caregivers who experienced more caring burden had a low quality of life. The researchers suggest that supportive and educational programs should be designed and implemented for this group of patients and their caregivers.

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Caring for the seniors with chronic illness: The lived experience of caregivers of older adults

Background Caregivers of the elderly with chronic illnesses are exposed to the burden associated with their caregiving activities. This study described the lived experience of caregivers of older adults in Nigeria. Methods A qualitative design guided by interpretive phenomenology informed the design of the research, whereby 15 in-depth interviews were conducted with caregivers of older adults with chronic illnesses. The interview sessions were audiotaped and transcribed verbatim and analysed using constant comparison analysis method. Results Fifteen caregivers, from different parts of Osun State, Nigeria, took part in the in-depth interviews. The caregivers were aged between 19 and 70 years, ten were women, five of them had secondary education, seven were self-employed and six were in a spousal relationship. The study uncovered four interrelated themes with explanatory subthemes—commitment to preservation of life (managing challenges associated with daily routine, problem with mobility, bathing and grooming, feeding, and problem with hygiene) (ii) denial (refusal to accept that burden exists) , other things suffer (disruption of family process, suffering from poor health and social isolation), (iv) reciprocity of care (pride in caregiving, caregiving as a necessity and not by choice, and law of karma). Conclusion This study provides insight into the burden of care of older adults with chronic illness. Caregivers' commitment to preserving life makes them provide assistance whose performance even run contrary to their own wellbeing. Intervention programme should be designed to support the caregivers thereby improving their wellbeing. 

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Burden and Coping Ability of Individuals Caring for Chronically Ill Older Adults in Nigeria: A Mixed Methods Study

Family members play key roles in the care of older adults with chronic illness. However, little is known about the negative consequences of caregiving in Sub-Sahara Africa. The current study examined the influence of caregivers' burden and coping ability on the health-related quality of life of caregivers of older adults with chronic illness. An exploratory sequential mixed methods study was conducted among 16 family members. Findings showed that caregivers experienced severe burden, coped moderately with the burden, and had poor quality of life. Furthermore, directed content analysis of the in-depth interviews uncovered six major themes: (a) Being Pulled in Opposite Directions, (b) Experiencing Poor Health, (c) Receiving Support From Family and Friends, (d) Turning to God for Help, (e) Seeking Relief for Aching Bodies, and (f) Seeking Remedies for Sleeplessness. The current findings may have implications for designing programs that aim to improve the well-being of caregivers.

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Effect of family intervention on family caregivers' burden, depression, anxiety and stress among relatives of depressed patients

Background: Depression is a major psychiatric disorder worldwide. It is a leading cause of individual disability and family burden worldwide. The aim of the study: the aim of this study was to investigate the effect of family intervention on caregivers' burden, depression, anxiety and stress among relatives of depressed patients. Subjects and method: A quasi-experimental design was conducted at the inpatient and outpatient Psychiatric Department Mansoura University Hospital, Egypt. Ninety five families participated in this study (n = 95). Pre-tests and post-tests (n = 95), and test 3 months after intervention were conducted on eighty six (n = 86). The caregivers were divided into ten groups, which ranged from 8 to 10 caregivers in each group; each group attended 12 sessions. A structured interview questionnaire for personal data for patients and their caregiver, Caregiver Burden scale, quality of life scale (QOL) and Depression, Anxiety and Stress Scale-21 items (DASS-21) were used to collect data. Results: The findings of the study indicate that caregivers' burden, depression, anxiety and Stress level significantly reduced, and quality of life significantly improved after implementation of family intervention. There is a negative correlation between QOL and Caregivers' burden, and their feeling of depression, anxiety and stress, while there was a positive correlation between caregivers' burden and their feeling of depression, anxiety and stress. Conclusions: Based on the current results, it can be concluded that caregivers' burden, |depression, anxiety and stress are highly prevalent among caregivers of patients with depression and significantly improved after implementation of family intervention one month after, moreover it slightly decreased three months after intervention. This conclusion leads to accept the hypothesis of the study that family interventions improve the caregivers' burden, QOL, and feelings of depression, anxiety and stress. Further research is needed to follow the intervention 6 and 12 months after family intervention.

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Effectiveness of an Educational Nursing Intervention on Caring Ability and Burden in Family Caregivers of Patients with Chronic Non-Communicable Diseases. A Preventive Randomized Controlled Clinical Trial

Objective. To evaluate the effect of the "Caring for Caregivers" program in the caring ability and burden in family caregivers of patients with chronic diseases at health care institutions. Methods. A randomized controlled clinical trial was conducted in 34 relatives of patients with chronic diseases that had cared for them for more than 3 months. Zarit scale was used to measure caregiver burden and the CAI (Caring Ability Inventory) was also used to measure caring ability. An educational intervention was applied based on the "Caring for Caregivers" strategy of the Universidad Nacional de Colombia. Results. Although both groups improved their percentage of unburdened caregivers from the first to the second assessment, the difference between the two assessments was 41.2% in the intervention group whereas it was 11.8% in the control group, being only statistically significant the difference for the intervention group. Regarding the caring ability, no significant changes were identified in both groups. Conclusion. On family caregivers, it was observed that the "Caring for Caregivers" intervention had a positive impact on decreasing burden, but not on improving the caring ability.

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Understanding caregiver burden from a long‐term perspective: The Banyan model of caregiver experiences

Purpose: A multiphase model for experiences of family members of persons with mental illness that considers both positive and negative aspects is proposed. Design and Methods: Mixed methods (semistructured interviews, life history timelines, focus group discussions, and the Experience of Caregiving Inventory) were used with caregivers accessing outpatient services of a nongovernmental organization in urban and rural locations around Chennai, India. Findings: Based on our results, we constructed a multiphase model, which we named The Banyan model of caregiver experiences. The phases are (1) manifestation of symptoms, (2) seeking help, (3) helplessness and attribution, (4) relative control and insight, (5) loss and worries, and (6) finding new meaning. Practical Implications: Our multiphase model allows us to identify in more detail the needs of caregivers at various stages.

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Sense of coherence, burden and mental health in caregiving: A systematic review and meta-analysis

Background: Informal caregiving is associated with a number of negative effects on carers' physical and psychological well-being. The salutogenic theory argues that sense of coherence (SOC) is an important factor in psychological adjustment to stress. The main aim of this study was to systematically review current evidence on the association between SOC, burden and mental health outcomes in informal carers. Method: A systematic search was carried out up to September 2017 in the following databases: PubMed, CINAHL (EBSCO), PsychInfo (OVID) and Scopus. Studies were included if they evaluated the relationship between sense of coherence and subjective caregiver burden and/or mental health outcomes, specifically symptoms of depression and anxiety. Meta-analyses were performed and subgroup analyses were carried out to explore if methodological factors influenced findings. Results: Thirty-five studies were included in the meta-analysis, which provided 40 independent samples with 22 independent comparisons for subjective caregiver burden, 26 for symptoms of depression and 7 for symptoms of anxiety. Higher levels of SOC were associated with lower levels of subjective caregiver burden and better mental health outcomes. Publication bias did not change the estimate of the effect. Limitations: Most of the studies included in this review were cross-sectional. Conclusions: Findings suggest that SOC is an important determinant of carer well-being and may protect carers from high levels of psychological distress and caregiver burden.

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Evaluation of Technology-Based Interventions for Informal Caregivers of Patients With Dementia-A Meta-Analysis of Randomized Controlled Trials

Objective: The aim of this study was to estimate the efficacy of technology-based interventions for informal caregivers of people with dementia (PWD). Methods: PubMed, PsycINFO, and Cochrane Library databases were searched in August 2018, with no restrictions in language or publication date. Two independent reviewers identified 33 eligible randomized controlled trials (RCTs) conducting a technology-based intervention for informal carers of PWD. Meta-analyses for the outcome measures caregiver depression and caregiver burden were conducted with subgroup analyses according to mode of delivery (telephone, computer/web-based, combined interventions). To assess methodologic quality, the Cochrane risk-of-bias assessment was rated. Results: Meta-analyses revealed a small but significant postintervention effect of technology-based interventions for caregiver depression and caregiver burden. Combined interventions showed the strongest effects. Conclusion: Technology-based interventions have the potential to support informal caregivers of PWD. Because of advantages such as high flexibility and availability, technology-based interventions provide a promising alternative compared with "traditional services," e.g., those for people living in rural areas. More high-quality RCTs for specific caregiver groups are needed.

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Living with schizophrenia: A cross-sectional study to measure family care burden

Objective: To determine the frequency of high burden of care on family members of patients with Schizophrenia. Study Design: Descriptive, Cross-sectional study. Place and Duration: Department of Psychiatry, Civil Hospital Karachi for Six months from 15th September, 2014 till 15th March, 2015. Methodology: Caregivers fulfilling the selection criteria were enrolled. "Zarit Burden Interview" (ZBI) was used for assessment of high burden over caregivers of schizophrenic patients. Different demographic factors like gender, age, education and employment status were also assessed. Results: Out of 150 caregivers, majority 83.3% were married followed by 9% being single and 9% being widow. In this study 58% caregivers had high burden as measured on ZBI. Out of those having high burden 52.8% were males while 47.2% were females. While gender distribution in caregivers having no burden 65% was males and 35% were females. Conclusion: This study reveals a high burden among caregivers living with patients of Schizophrenia.

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Adaptation and validation of the Caregiver Burden Inventory in Spinal Cord Injuries (CBI-SCI)

Design: Validation cross-sectional study. Objectives: Even though caregiver burden (CB) represents a well-recognised concern among caregivers of people with a spinal cord injury (SCI), there are no specific questionnaires designed for its evaluation. This study aimed to assess the psychometric properties of the Caregiver Burden Inventory in Spinal Cord Injury (CBI-SCI), which was modified from its original version, and specifically its construct and reliability. Setting: Multicentre study in four urban spinal units across Italy. The CBI-SCI was administered to family caregivers in outpatient clinics.Methods: CBI-SCI was administered in a toolset composed of a sociodemographic questionnaire, the Family Strain Questionnaire-Short Form (FSQ-SF), the Short Form-36 (SF-36), and the Modified Barthel Index (MBI). The CBI-SCI construct validity was assessed through an exploratory factor analysis. The internal consistency of the questionnaire was examined using Cronbach's alpha (α) coefficient for the total scale and its subscales. Concurrent validity was evaluated performing Pearson's correlation coefficient with all instruments included in the toolset. Results: The CBI-SCI was administered to 176 participants from February 2016 to September 2017. Factor analysis highlighted the five-factored structure of the questionnaire. The total scale Cronbach's α was 0.91 (p < 0.001). All the five subscales of CBI-SCI showed an acceptable internal consistency, ranging from 0.76 to 0.91 (p < 0.001). Pearson's correlation coefficients of the CBI-SCI with all the administered instruments were statistically significant (p < 0.001), showing congruent relations. Conclusion: The CBI-SCI, due to its validity and reliability, may represent a valuable instrument to evaluate the CB longitudinally in SCI.

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The burden, support and needs of primary family caregivers of people experiencing schizophrenia in Beijing communities: a qualitative study

Background: Family caregivers play crucial roles in taking care of people experiencing schizophrenia in the community. The burdens on and needs of caregivers of these patients should be emphasized. This study aimed to explore the perspective of family caregivers of people experiencing schizophrenia in the communities of Beijing in terms of the burdens of care and the acquisition and further need for support in order to provide guidance to health care providers regarding how to target therapeutic interventions for families of individuals experiencing schizophrenia and to provide recommendations for policy makers to tailor countermeasures and services.; Methods: A total of 20 family caregivers of schizophrenia patients were enrolled in our study. A face-to-face and semi-structured in-depth qualitative interview study was conducted to explore the caregivers' perspective on the burden on caregivers, support and further needs. This study was conducted in the community health service centres where the family caregivers regularly visit. The study was carried out according to good ethical practices, data analysis and reporting guidelines.; Results: Most participants reported that they were suffering from heavy life burdens and had negative experiences with respect to obtaining social support, and they emphasized that they would require more support. Economic and daily housework burdens, limited social communication, and psychological stresses were the principal burdens. Support including financial, medical and information and educational support did not satisfy the needs of the caregivers and their patients. More financial support, respect, and rehabilitation institutions were reported to be needs of the caregivers.; Conclusions: Family caregivers of people experiencing schizophrenia suffer from heavy physical and psychological burdens; however, the current support provided is insufficient. More services and better public attitudes should be considered for people experiencing schizophrenia and their caregivers.

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Acceptance and identity change: An interpretative phenomenological analysis of carers' experiences in myalgic encephalopathy/chronic fatigue syndrome

Myalgic encephalopathy/chronic fatigue syndrome is a debilitating condition and many people rely heavily on family carers. This study explored the caring experiences of seven family carers. Four themes were established: relations with others, role and identity changes, coping with change and uncertainty, and information and support seeking. Caring disrupted multiple areas of carers' lives, including their identities and relationships. Scepticism from others about myalgic encephalopathy/chronic fatigue syndrome was particularly distressing. Acceptance was important for coping and helped some carers achieve positive growth within spousal relationships. Improving support and advice for carers and acknowledging their caring burden could improve their well-being.

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How Is End-of-Life Care With and Without Dementia Associated With Informal Caregivers' Outcomes?

Background: Palliative care for older people with life-limiting diseases often involves informal caregivers, but the palliative care literature seldom focuses on the negative and positive aspects of informal caregiving.; Objective: To assess the association of proximity to end of life (EOL) and dementia caregiving with informal caregivers' burden of care and positive experiences and explain differences in outcomes.; Design: Data on 1267 informal caregivers of community-dwelling older people were selected from a nationally representative cross-sectional survey and analyzed using analysis of variance and multivariable regression analyses.; Measurements: The Self-Perceived Pressure from Informal Care Scale and the Positive Experiences Scale were administered to assess caregiver burden and positive experiences with providing care.; Results: Dementia care, both at EOL and not at EOL, was associated with the most caregiver burden relative to regular care. Dementia care not at EOL was associated with the fewest positive experiences, and EOL care not in dementia with the most positive experiences. Only the differences in burden of care could be explained by variables related to stressors based on Pearlin stress-coping model.; Conclusions: Informal caregivers of people with dementia are at risk not only of high caregiver burden but also of missing out on positive experiences associated with caregiving at EOL. Future research should examine how dementia-related factors reduce positive caregiving experiences, in order to make palliative care a positive reality for those providing informal care to community-dwelling persons with dementia.

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Experience of companionship among family caregivers of persons with dementia: A qualitative study

We examined how caregivers experienced the influence of dementia on their relationships with afflicted family members. Family caregivers (n = 15; 11 women and four men; age 39–92 years) of people with dementia participated in semi-structured interviews. The data were analyzed according to Kvale and Brinkman. The analysis identified one overarching theme, experiences of companionship, and four subthemes, namely experiences of loss and loneliness; role change; communication alteration; and caring considerations and coping resources. The caregivers described their companionship with the family member, including warm feelings of reciprocity, as well as contradictory feelings, such as feelings of being burdened. They expressed a desire to continue caring for their relative and emphasized the positive aspects of their relationship. Knowledge about dementia, together with a good relationship with their ill family member, facilitated the caring role. These results highlight the importance of receiving information about dementia-related challenges and the implications of being a caregiver.

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Brief telephone counselling is effective for caregivers who do not experience any major life events - caregiver-related outcomes of the German day-care study

Background: To date, there has been a dearth of scientifically tested, established intervention concepts focussed on supporting informal caregivers and embedded in routine health care structures. The aim of this study was to assess effects of a brief telephone intervention for caregivers of persons with cognitive impairment (PCIs) on caregivers' depressiveness and subjective burden.; Methods: A two-arm cluster-randomised controlled intervention study was carried out at 32 German day-care centres. During the six-month intervention period, informal caregivers in the intervention group (n = 205) received counselling in three phone calls focussed on stress reduction, development of self-management strategies, and how to deal with challenging behaviours. Both the control group (n = 154) and the intervention group were free to take part in any support programmes offered by the German Health Care System (TAU). Caregivers' subjective burden and depressiveness were measured with the Burden Scale for Family Caregivers - short version (BSFC-s) and the WHO-5 Well-Being Index (WHO-5). Outcomes were assessed by means of computer-assisted telephone interviews (CATIs) at baseline and at the end of the six-month intervention phase. Multiple regression analyses were used to show the influence of group allocation.; Results: After the intervention phase, group allocation was not found to significantly predict caregivers' subjective burden or depressiveness. The baseline scores (p < 0.001) were the only significant predictors of change in both outcomes. However, sensitivity analyses for caregivers who did not experience any events that they felt were major (in a negative or positive sense) during the six months (n = 271) showed that group allocation (p < 0.05) was a significant predictor of positive change in both outcomes (BSFC-s: Δ-1.3, [- 2.4, - 0.3], Cohen's d = 0.27; WHO-5: Δ1.5, [0.4, 2.7], Cohen's d = 0.26). Effect sizes were highest in the subgroup of caregivers of people with mild dementia (BSFC-s: Cohen's d = 0.43; WHO-5: Cohen's d = 0.42).; Conclusions: A "low-dose" psychoeducative telephone intervention designed to empower caregivers is effective, especially in an early stage, if the overlap between the effect of the intervention and the effect of events that are experienced as major events in the caregiver's life is considered.; Trial Registration: Identifier: ISRCTN16412551 (Registration date: 30 July 2014, registered retrospectively).

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Quality of life and burden of informal caregivers providing care for patients with low function agility in the home environment

Background. Providing care to patients with low function agility in the home environment becomes a burden and leads to the worsening of the informal caregiver's quality of life. Objectives. Aim of the research was to assess the quality of life of informal caregivers in the context of their burden linked to the care provided to chronically ill patients with low function agility in the home environment. Material and methods. Research was conducted in five public healthcare facilities, from September 2016 until February 2017, and included 138 informal caregivers. The WHOQoL-AGE scale was used to assess caregivers' quality of life, and the COPE Index was employed to assessed caregivers' burden. Results. According to WHOQoL-AGE, the average value of caregivers' quality of life was 70.14 points. Caregivers' burden according to the COPE Index Negative Impact of Care subscale was: M = 11.80; Positive Value of Care subscale: M = 13.71; and in Quality of Support subscale: M = 12.46. Statistical importance was at p ≤ 0.01 for WHOQoL-AGE scale, and the burden according to the COPE Index. Conclusions. Informal caregivers' quality of life according to the WHOQoL-AGE scale corresponds significantly with caregivers' burden according to the COPE-Index, in all of the analysed domains. Along with the increase of the negative influence of the care, general quality of life with all its subscales, as well as satisfaction, decreases. Caregivers' quality of life increases along with the increase of the satisfaction connected to the provided care, and with receiving support from informal and formal healthcare.

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Turkish Adult Children as Caregivers of Parents with Alzheimer's Disease: Perceptions and Caregiving Experiences

There is substantial evidence suggesting that Western and non-Western caregivers of patients with Alzheimer's disease have different caregiving experiences depending on the cultural values they adopt. Although family-centered constructs such as familism and filial piety have taken some attention, there is still a paucity of research on how cultural values and norms shape caregiving appraisals, coping strategies, and formal service use specifically in Eastern-oriented contexts. The aim of this study was to investigate Turkish adult children caregivers' perceptions of Alzheimer's disease and caregiving experience. Researchers conducted in-depth interviews with 20 primary caregivers and analyzed data with interpretative phenomenological analysis. First, most caregivers viewed family disharmony as the main cause of the disease. Second, although burden is evident in their accounts, caregivers reported positive changes during their caregiving experiences, as well. Third, caregivers employ religious/fatalistic coping and they benefit from social support during their caregiving experiences. Forth, most caregivers opposed to nursing home placement because they view it as a morally improper act; they are afraid of neighborhood pressure; they perceive caregiving as a child's responsibility; they do not want their children to do so; and they do not trust conditions of care facilities in Turkey. Findings indicated that Eastern norms and values might have differential impacts on Alzheimer's disease caregiving outcomes. Hence, we invite mental health professionals to integrate culturally sensitive aspects into the possible intervention programs targeting Alzheimer's disease caregivers from non-Western contexts.

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Factors associated with high psychological distress in primary carers of people with disability

Background: Primary caregivers of people with disability provide extensive physically and emotionally demanding care.  Objectives: The aim of this study was to quantify the burden of high psychological distress in primary carers of people with disability and identify modifiable factors in relation to high psychological distress. Methods: The 2015 national 'Survey of Disability, Ageing and Carers in Australia' was used to derive a nationally representative sample and estimate weighted prevalence rates of high psychological distress (Kessler scores >=22) in primary carers of people with disability. Risk factors were evaluated using weighted logistic regression models with lasso techniques. Results: Approximately 27% of carers had high psychological distress. Nearly half of the study population reported changes in their health and wellbeing. A delay in general practitioner (GP) visits was common and associated with >2-fold increase in risk of high psychological distress. Discussion: The findings suggest targets for early diagnosis and intervention, and adequate referrals from GPs to meet the health needs of carers.

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Improving patient safety by easing caregiver burden

The physical and emotional toll of caring for someone who requires assistance moving, bathing, eating, grooming, and using the restroom increases if he or she is exhibiting signs of confusion or aggression. The literature is abundant with evidence that family caregivers are prone to anxiety and depression related to their duties. Additionally, burdened caregivers can put their patients at risk, as anxiety and depression can impact judgment. Caught in temporary situations that can seem endless, many caregivers experience mental health issues related to social isolation, financial concerns, and physical exhaustion. Here, Mathias explores the psychological impact of providing end-of-life care for a loved one and offers tools to assess and alleviate caregiver burden.

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Employed Caregivers’ Response to Family-Role Overload: the Role of Control-at-Home and Caregiver Type

Drawing from role theory, stress and coping, and caregiving literatures, this paper develops a model of family-role overload involving two forms of caregiver burden (subjective, objective) and two types of maladaptive changes in employee behavior (at work, personal), and hypothesizes that caregiver type (eldercare-only vs. sandwich) moderates all paths in the model. Partial Least Squares structural equation modeling (SEM) supported all hypothesized direct paths. Contrary to our hypotheses, data analysis showed two positive relationships (i.e., objective caregiver burden to family-role overload, family-role overload to maladaptive changes in personal behavior) were stronger for those in the eldercare-only sample than for those in the sandwich sample. Post hoc analysis revealed five significant gender differences in the relationships included in our model. This study contributes to work–family theory by reinforcing the need to consider both caregiver type and gender when researching the challenges faced by employees trying to balance work and caregiving.

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Caregiver Burdens of Family Members with Alzheimer's Disease

Alzheimer's disease is the sixth leading cause of death in the United States and more than five million Americans are living with the disease (Alzheimer's Association, 2016). Alzheimer's disease takes a devastating toll on caregivers. According to Richardson, Lee, Berg-Weger, and Grossberg (2013), many factors influence the perceived burden of caring for a relative or friend with Alzheimer's disease (Richardson et al., 2013). These factors include characteristics of the caregiver, such as kinship ties, gender, psychological resources, and coping strategies. The purpose of this study was to compare the perceived caregiver burdens of the primary, full-time, at-home caregiver of patients with Alzheimer's disease to the perceived caregiver burdens of patients with Alzheimer's disease who attend an adult day care center. Using a descriptive quantitative research design, data was collected using the Caregiver Burden Inventory (CBI), which is a 24-item measure to assess caregivers of family members with Alzheimer's disease and obtain demographic data. A conceptual model developed by Neuman (1995) provided the health promotion and primary prevention framework of this study. Findings of the study indicate no difference in the perceived caregiver burdens whether the caregiver takes care of the family member with Alzheimer's disease 24 hours a day or has respite from care five days a week at an adult care center. Additionally, findings also indicate the need to refine community and professional understanding of the challenges caregivers face, and provide valuable information regarding necessary improvements of services for caregivers of patients with Alzheimer's disease.

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The Association Between Sexual Disinhibition and Family Caregiver Burden in Dementia

Dementia caregiving is costly for society and has been linked to many adverse outcomes in the caregiver, including financial and occupational strain, greater psychological distress, and physical comorbidities, together termed “caregiver burden.” Certain dementia care recipient characteristics, such as the presence of neuropsychiatric symptoms (e.g., hallucinations, agitation), are associated with high caregiver burden. One neuropsychiatric symptom, sexual disinhibition, has received little research attention. The present study examined demographic characteristics of sexual disinhibition and the relationship between sexual disinhibition and caregiver burden as reported by 416 informal (i.e., family) dementia caregivers recruited through social media dementia caregiving groups. Results showed 15.9% of caregivers reported sexual disinhibition in their care recipient. A higher percentage of male care recipients were reported to display sexual disinhibition (Sexual disinhibition group; SD) compared to the percentage of males who were reported to display no sexual disinhibition (No sexual disinhibition group; NSD). Care recipients in the SD group were younger compared to care recipients in the NSD group. Groups did not differ in dementia diagnosis or duration of disease. The SD group did not report a significantly higher level of caregiver burden compared to the NSD group, though there was a trend toward significance. Frequency of sexual disinhibition did not predict caregiver burden within the SD group, and frequency of other neuropsychiatric symptoms accounted for greater variance in caregiver burden than did frequency of sexual disinhibition within the SD group. The current work adds to the literature by characterizing the demographics of sexual disinhibition as reported by a large sample of informal caregivers, and by examining the links between sexual disinhibition and caregiver burden. Findings suggest that sexual disinhibition occurs with great enough frequency that it should be routinely considered by clinicians screening for behavioral problems in dementia patients. Although no significant associations between sexual disinhibition and caregiver burden were revealed within this sample, it is possible that methodological constraints obscured these relationships. Future work should re-examine these questions using different methods. If a relationship between sexual disinhibition and caregiver burden is found, methods for managing caregiver burden in the presence of sexual disinhibition should be explored.

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Trajectories of caregiver burden in families of adult cystic fibrosis patients

Objectives: Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden. Methods: This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time. Results: Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time. Significance of results: Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.

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Changes in and modifiable patient‐ and family caregiver‐related factors associated with cancer patients’ high self‐perceived burden to others at the end of life: A longitudinal study

This prospective, longitudinal study explored changes in and modifiable factors associated with high self‐perceived burden to others (SPB) among a convenience sample of 276 dyads of terminally ill Taiwanese cancer patients and their family caregivers over patients’ last year of life. High SPB was evaluated by scores ≥20 on the Self‐Perceived Burden Scale. Modifiable factors of high SPB included factors related to both patients (i.e., symptom distress, functional dependence and coping capacity) and caregivers (i.e., caregiving burden, depressive symptoms and quality of life [QOL]). Modifiable factors of high SPB were identified by multivariate logistic regression modelling with the generalised estimating equation while controlling for demographic factors. We found that patients tended to experience high SPB if they had more symptom distress. In contrast, the likelihood of high SPB was significantly lower if patients had greater coping capacity and their caregivers reported better QOL. High SPB was not associated with patients’ functional dependence, caregivers’ caregiving burden and depressive‐symptom level while providing end‐of‐life (EOL) care, and time proximity to death. Healthcare professionals may alleviate terminally ill cancer patients’ high SPB at EOL through palliative care that adequately manages patients’ physical symptom distress, enhances patients’ coping capacity and improves family caregivers’ QOL.

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Rob Lowe: Who Cares for the Carer? | Opinion

In January 2018, President Donald Trump signed the Recognize, Assist, Include, Support and Engage (RAISE) Family Caregivers Act, a law that directs Secretary of Health and Human Services Alex Azar to develop and maintain a strategy to support caregivers in the next 18 months. According to the initiative, nearly a quarter of the 3,516 unpaid caregivers they surveyed in 2017 said their careers had suffered because of caring for a family member. When you get on an airplane, the crew says, "Secure your own mask first before helping others." Because without you taking care of yourself, you can't take care of anybody else.

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Caregiver Burden for Patients With Severe Osteoarthritis Significantly Decreases by One Year After Total Knee Arthroplasty

Background: The impact of total knee arthroplasty (TKA) on patients' informal caregivers (eg, family members, friends) has gone largely ignored. The goals of this study are to measure the impact of TKA on the caregiver and identify factors contributing to higher burden.; Methods: One hundred fifty primary TKA patients and their designated caregivers were prospectively enrolled. The Caregiver Strain Index (CSI) was completed by caregivers preoperatively, at 4 weeks, and at 1 year after surgery. Additional outcomes included the Knee injury and Osteoarthritis Outcome Score for patients only and the Veterans Rand 12 Item Health Survey for both patients and caregivers. Univariate analysis and multivariate regression modeling were performed.; Results: Mean CSI scores at 1 year were significantly lower than preoperative values (P < .01), where lower scores indicate better results. Higher mean CSI values for younger caregivers were identified preoperatively (r = -0.21, P < .01) and at 4 weeks (r = -0.26, P < .01). There were higher mean CSI values for employed caregivers preoperatively (P = .01) and at 4 weeks (P < .01). A negative correlation was identified between CSI and the caregiver's Veterans Rand 12 Item Health Survey Mental Component Score preoperatively (r = -0.15, P = .03) and at 4 weeks (r = -1.5, P = .03).; Conclusion: Caregiver burden nearly doubled in the early postoperative period, which was related to several caregiver and patient factors. However, the burden was close to zero by 1 year postoperatively. Thus, TKA is a beneficial intervention for both patient and caregiver.

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The relation between social cohesion and the care burden of family healthcare providers

This study aimed to clarify the relationship between social cohesion and family care burden. The social capital indicators of Kondo et al. and the short version of the Zarit Care Burden Interview Scale in Japanese (J-ZBI_8) were used. Data were analyzed by multiple regression models. Seventy-one caregivers responded. Factors showing statistical significance in the multiple regression analysis included "receipt of emotional support" (p = 0.009) and "instrumental support provided" (p = 0.010). Social support was suggested to have a possible effect on the care burden of the main caregivers to relate to less burden. The gap between the original ideal loss and the social role caused by providing nursing care is likely to increase the degree of care burden.

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Assessment of Burden Among Family Caregivers of Schizophrenia: Psychometric Testing for Short-Form Zarit Burden Interviews

Objective: Although various short forms of Zarit Burden Interview (ZBI) have been developed, there is a lack of standard psychometric testing and comparison among them. The study aims to examine the psychometric properties of ten short versions of the most frequently used ZBI among a sample of schizophrenia caregivers and to find the one with the best performance. Methods: Cross-sectional door-to-door survey of ZBI-22 and a series of validated instrument data from 327 family caregivers of schizophrenia patients in a Chinese rural community were conducted from October 2015 to January 2016. Reliability was assessed using McDonald's omega coefficient (ω). Validity including concurrent validity, known group's validity, and criterion validity were assessed by Spearman correlations and Mann-Whitney U tests. Overall discrimination ability was evaluated using the area under the receiver operating characteristic curve (AUC). Results: Reliability was generally good for all short forms (ω = 0.69-0.84), except for the Gort ZBI-4 (ω = 0.58), which is acceptable considering its small item numbers. Concurrent validity was good across all various ZBI forms with significant negative correlations with patient's function (r = -0.34 to -0.48, p < 0.01), as well as significant positive correlations with caregiver's depression (r = 0.49-0.65, p < 0.01), and anxiety symptoms (r = 0.45-0.58, p < 0.01). Known groups' validity (carers with disease vs. without disease; carers being parents vs. spouse vs. others) showed inconsistent results among various short forms. Criterion validity was generally good for all short forms with significant positive correlations with Family Burden Interview Schedule (r = 0.67-0.75, p < 0.01), except for the Higginson ZBI-1(r = 0.57, p < 0.01). Discriminative ability was also good for all short forms (AUC range: 0.85-0.99), with various cutpoints proposed. Among all ten short forms, the Ballesteros ZBI-12 and the Gort ZBI-7 outperformed others with almost equally good performance in comprehensive psychometric testing. Conclusions: This study provides support for the reliability, validity, and discriminative ability of the ten various short forms of ZBI for use among schizophrenia family caregivers, with the Ballesteros ZBI-12 and the Gort ZBI-7 endorsed as the best ones.

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Interventions for reducing levels of burden amongst informal carers of persons with dementia in the community. A systematic review and meta-analysis of randomised controlled trials

Objectives: Caregiver burden can lead to increased stress, depression and health difficulties for caregivers and care-recipients. This systematic review aimed to examine the published evidence, for interventions designed to reduce levels of carer burden, in those caring for a person with dementia.; Methods: Three databases were searched (Medline, PsycINFO and CINAHL) for studies reporting on randomised controlled trials of non-pharmacological interventions for dementia-related caregiver burden. Data quality checks were completed for included papers and meta-analysis was performed to estimate the efficacy of individual interventions and different categories of non-pharmacological intervention.; Results: Thirty studies were included in the analysis. Seven studies found a significant reduction in carer burden and a pooled effect found that intervening was more effective than treatment as usual (SMD = -0.18, CI = -0.30, -0.05). This result was small, but significant (p = 0.005). Multi-component interventions are more effective than other categories. High heterogeneity means that results should be interpreted with caution.; Conclusions: Interventions that significantly reduced levels of burden should be replicated on a larger scale. The relative effectiveness of interventions targeting cognitive appraisals and coping styles suggests that future interventions might be informed by models theorising the role of these processes in carer burden.

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Caregiving to Older Adults: Determinants of Informal Caregivers’ Subjective Well-being and Formal and Informal Support as Alleviating Conditions

Objectives In response to concerns about the sustainability of health care systems that increasingly rely on informal care, we first investigate explanations of informal caregivers’ subjective well-being: primary stressors (care-receivers’ cognitive impairment, functional disability, and problem behavior), primary appraisal (hours of informal caregiving), and secondary appraisal (burden). Second, we investigate the extent that formal (professional home care) and informal support (from other caregivers/volunteers and from family/friends) alleviate well-being losses due to informal care provision. We modified the stress–appraisal model to explicitly include buffering effects of support. Method We analyzed 4,717 dyads of Dutch informal caregivers and their older care-receivers from the Older Persons and Informal Caregivers Survey Minimum DataSet with multilevel techniques. Results Caregivers’ subjective well-being was directly correlated with burden, hours of informal caregiving, and problem behavior of care-receivers. It was indirectly correlated with care-receivers’ cognitive impairment and functional disability. Formal and informal support weakened the positive relationship between primary stressors and caregiving hours. Discussion Modification of the stress–appraisal model appears useful as it identifies which sources of support buffer at which stages of the stress process. Findings suggest that cutbacks in formal/professional care may aggravate negative well-being outcomes of informal caregiving and compromise informal caregivers’ labor market participation.

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Family cohesion, burden, and health-related quality of life among Parkinson's disease caregivers in Mexico

Background: Informal caregivers of individuals with Parkinson's disease face a range of responsibilities that increase as the disease progresses. As a result of these stressors, caregivers are vulnerable to decreased health-related quality of life (HRQOL). Guided by the stress process model of caregiving, the present study examined the relations between family cohesion, perceived burden, and mental and physical HRQOL among Parkinson's disease caregivers in Mexico. It was hypothesized that perceived burden would mediate the relations of family cohesion and mental and physical HRQOL.; Methods: Ninety-five family caregivers of individuals with Parkinson's disease in Mexico City, Mexico, participated in the study. Multiple regression was utilized to conduct mediation analyses.; Results: Results indicated that burden fully mediated the relation between family cohesion and mental HRQOL, and family cohesion was not associated with physical HRQOL.; Conclusions: Findings extend the stress process model cross-culturally and lend support for the importance of family cohesion and perceived burden in determining caregiver mental HRQOL. Clinical health promotion interventions should target perceived burden and family cohesion together to improve mental HRQOL among familial caregivers in Mexico.

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Predictors of potentially harmful behaviour by family caregivers towards patients treated for behavioural and psychological symptoms of dementia in Japan

Background: Potentially harmful behaviour (PHB) by caregivers is detrimental to the physical and psychological well‐being of care recipients. In Japan, few studies have investigated caregivers’ PHB towards dementia patients. This study examined PHB in family caregivers of dementia patients with behavioural and psychological symptoms of dementia (BPSD) and identified factors related to PHB. Methods: Following primary consultations at an elderly psychiatric patient department, we enrolled 133 pairs of dementia patients and their family caregivers. We assessed PHB using the Japanese version of the modified Conflict Tactics Scale. We defined the presence of PHB as two or more points (PHB frequency of ‘sometimes’ or more) on at least one indicator of the modified Conflict Tactics Scale. We investigated the prevalence of PHB in relation to the clinical characteristics of the patients and their family caregivers. We evaluated BPSD using the Neuropsychiatric Inventory and caregiver burden using the eight‐item Japanese version of the Zarit Caregiver Burden Interview. Results: Of the family caregivers, 48.9% showed PHB. Multivariate analysis identified the following association with PHB: caregiver's Zarit Caregiver Burden Interview total score (odds ratio [OR], 1.09 per unit increase; 95% confidence interval [95%CI], 1.02–1.16), and Neuropsychiatric Inventory scores for patient irritability (OR, 1.22 per unit increase; 95%CI, 1.06–1.40), appetite/eating disorders (OR, 1.41 per unit increase; 95%CI = 1.08–1.84) and daughters‐in‐law caregivers (OR, 0.17, 95%CI, 0.05–0.57). Conclusions: Specific BPSD symptoms could contribute to the expression of PHB. In addition to decreasing caregiver burden, more intensive treatment and care strategies are required to manage individual symptoms.

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Overestimation of hours dedicated to family caregiving of persons with heart failure

Aims: The aim of this study is to profile the family caregivers of people living with heart failure, to determine the perceived and real time devoted to daily care and to identify the factors associated with caregivers’ overestimation of time dedicated to care. Background: The time spent by family caregivers on daily care is related to overload, but there are differences between real and perceived time spent. The reason for this difference is unknown, as is its impact on the caregiver. Design: Multicentre, cross‐sectional study. Methods: This study forms part of a longitudinal, multicentre, ambispective cohort investigation. The study population was composed of 478 patient–family caregiver dyads and the data were collected over 2 years from 2014 ‐ 2016. Results: The mean time perceived to be spent on daily care was 8.79 hr versus a real value of 4.41 hr. These values were positively correlated. A significant correlation was also found between the overestimation of hours spent and the age of the caregiver, the duration of the caregiving relationship and the number of people providing support and with the patient's level of dependence and self‐care. Conclusion: The overestimation of time dedicated to care seems to be related to patients’ and caregivers’ characteristics, such as functional status, caregiver burden, age and cohabitation. These patterns should be considered by nurses when carrying out assessment and care planning with these patients and their caregivers.

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Outcomes of an electronic social network intervention with neuro-oncology patient family caregivers

Introduction: Informal family caregivers (FCG) are an integral and crucial human component in the cancer care continuum. However, research and interventions to help alleviate documented anxiety and burden on this group is lacking. To address the absence of effective interventions, we developed the electronic Support Network Assessment Program (eSNAP) which aims to automate the capture and visualization of social support, an important target for overall FCG support. This study seeks to describe the preliminary efficacy and outcomes of the eSNAP intervention.; Methods: Forty FCGs were enrolled into a longitudinal, two-group randomized design to compare the eSNAP intervention in caregivers of patients with primary brain tumors against controls who did not receive the intervention. Participants were followed for six weeks with questionnaires to assess demographics, caregiver burden, anxiety, depression, and social support. Questionnaires given at baseline (T1) and then 3-weeks (T2), and 6-weeks (T3) post baseline questionnaire.; Results: FCGs reported high caregiver burden and distress at baseline, with burden remaining stable over the course of the study. The intervention group was significantly less depressed, but anxiety remained stable across groups.; Conclusions: With the lessons learned and feedback obtained from FCGs, this study is the first step to developing an effective social support intervention to support FCGs and healthcare providers in improving cancer care.;

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Informal Caregiving Relationships in Psychosis: Reviewing the Impact of Patient Violence on Caregivers

A modest association can be found between people with a schizophrenia spectrum diagnosis (psychosis) and perpetrating acts of violence. When a person with psychosis does engage in violence, it is their informal carers, when compared to those from the general population, who are more likely to be the targets, and violence will often occur within the family home. Despite the importance of carer support for improving patient outcomes, our understanding of how carers are impacted by patient initiated violence in psychosis remains limited. This paper reviews literature documenting the effects of patient-initiated violence in psychosis on carer functioning. The review comprised searches of Medline, PsychInfo, Embase, and Web of Science databases and the hand searches of reference lists from relevant published papers. The review was limited to English language publications from inception to 11th September 2017, and where carer experiences following reports of violence from patients with psychosis were specifically recorded. Data from 20 papers using mixed methodologies were reviewed. Patient violence in psychosis was linked to poorer carer outcomes, including carer reports of burden, trauma, fear, and helplessness. There is, however, a significant need for further studies to systematically quantify the impact and correlates of patient initiated violence on psychosis caregivers, and improve prevention.

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The effects of a community mental health intervention project upon family caregivers of persons with suspected mental illness in the Chinese cultural context

Family members play an important role in caregiving with more emphasis on early intervention for people suffering from mental illness. Using both quantitative and qualitative methods, this study examines the effects of a community mental health intervention project (CoMHIP) on burdens of caregivers who have family members with suspected mental illness. Results showed that family caregivers’ burden and psychological stress level had been reduced (p < .001). The caregivers subjectively experienced a significant reduction in stress regarding the caregiving subscales, supervision, tension, worrying and urging after seeking CoMHIP service. Findings for the study have implications on social work interventions regarding family caregiving of people with suspected mental health problems.

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Investigation into the needs of informal caregivers of stroke survivors in Antananarivo, Madagascar

Background: Stroke is the second leading cause of disability in Madagascar, half of those affected are <50. All treatment must be paid for; however, 92% live on <2€/day, so informal caregivers are very important. Method: In 2017, 15 caregivers of stroke survivors were interviewed by a medical student, in the rehabilitation department of the university hospital in Antananarivo, Madagascar. A semi-structured interview guide was devised exploring their understanding of stroke, assistance in activities of daily living (ADL) (using visual cues), and care burden (based on caregiver burden tools). Audio recordings and notes were analysed using thematic analysis. Results/Findings: Caregivers often lacked understanding on preventing stroke recurrence and the extent of possible recovery. Care burden was considerable, including impact on own well-being and finances, and caregivers felt that they had little access to specialized equipment or help. Participants were desperate for information regarding stroke care and recovery; this may have influenced how they approached the interviewer, as a potential information source, and therefore not been as critical of the health service. Discussion: These findings are similar to other literature on stroke survivors and caregivers in high- and middle-income countries; no literature was found in low-income countries. Limitations to this study include that a high-income group were interviewed and a translator was used. There are no occupational therapists in Madagascar, which limits the exploration of their potential benefit. Conclusion: This study is the first to explore the needs of caregivers of stroke survivors in Madagascar, the findings of which can help to inform future work in low-income countries on stroke carers. 

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Mediators of burden and depression in dementia family caregivers: Kinship differences

Objectives: To investigate kinship differences in the caregiver stress process by developing multiple mediation models for two distinct caregiver subgroups (spouses and adult children of older adults living with dementia). The effect of four potential mediating variables (mastery, self-efficacy, satisfaction with social support, positive caregiving appraisals) on the relationship between perceived burden and depression was evaluated.; Method: Family caregivers of a person living with dementia were recruited through national dementia and carer organisations. Participants completed a paper-based or electronic version of the study survey. A bias-corrected, accelerated bootstrapping method was used to test the effect of the four proposed mediating variables on the relationship between perceived burden and depression in each caregiver subgroup (spouses and adult children).; Results: Perceived burden was directly and significantly related to depression for both spouse caregivers and adult child caregivers. The mediation models explained approximately 50% of the variance in the burden-to-depression pathway for both caregiver subgroups. Mastery and social support (but not self-efficacy, nor positive caregiving appraisals) were found to individually significantly influence the impact of perceived burden on depression in spouse caregivers. All four proposed mediators failed to reach statistical significance as individual mediators of the burden-to-depression pathway in adult child caregivers.; Conclusion: These findings demonstrate differences in the dementia caregiver experience according to kinship, and that certain mediating variables are more relevant for some subgroups of caregivers than others. Implications for the design of psychosocial interventions are discussed.

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Comparative Effectiveness of 2 Interventions for Hispanic Caregivers of Persons with Dementia

Objectives: To compare the effectiveness of 2 caregiver interventions with known efficacy: the Resources for Enhancing Caregiver Health‐Offering Useful Treatment (REACH‐OUT) and the New York University Caregiver Intervention (NYUCI). Design: 1:1 randomized pragmatic trial. Setting: New York City. Participants: Informal Hispanic caregivers of persons with dementia (N=221; mean age 58.2, 82.8% female, 63.3% adult children, 31.7% spouses). Intervention: Participants were randomized to 6 months of NYUCI (n=110) or REACH‐OUT (n=111), balanced on characteristics at baseline. All participants were referred for social supportive services. Measurements: The primary outcomes were changes between baseline and 6 months in depressive symptoms, measured using the Geriatric Depression Scale (GDS), and caregiver burden, measured using the Zarit Caregiver Burden Scale (ZCBS). Results: There were no differences in outcomes between NYUCI and REACH‐OUT. Both interventions showed a reduction in burden (REACH‐OUT: 5.2 points, 95% confidence interval (CI)=2.2–8.1, p<.001; NYUCI: 4.6‐points, 95% CI=1.7–7.5, p=.002). There were no significant changes on the GDS. Effects for the ZCBS were significant only for spouses and older caregivers. Conclusion: Although there were no significant intervention group differences, both interventions resulted in significantly reduced burden for Hispanic caregivers at 6 months, particularly for spouses and older caregivers.

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Relationships between family resilience, breast cancer survivors' individual resilience, and caregiver burden: A cross-sectional study

Background Caregivers of breast cancer survivors experience various types of burden, which in turn is linked to patients' physical and psychological status. Family resilience might be able to decrease caregiver burden and facilitate survivors' individual resilience, and individual resilience might be related to caregiver burden. Nevertheless, these relationships have not yet been confirmed. Objective To determine the relationships between family resilience, breast cancer survivors' resilience, and principal caregivers' caregiver burden, as well as determine whether breast cancer survivors' individual resilience plays a mediating role in the relationship between family resilience and caregiver burden. Design Cross-sectional study design. Setting The comprehensive cancer center of a public hospital in Shandong Province, China. Participants The sample comprised 108 dyads of early-stage breast cancer survivors and their principal caregivers. Methods The principal caregivers completed the Shortened Chinese Version of the Family Resilience Assessment Scale and the Chinese Version of the Zarit Caregiver Burden Interview, while the breast cancer survivors completed the 10-item Chinese version of the Connor-Davidson Resilience Scale and provided their sociodemographic information. The mediating effect of individual resilience was estimated using the bootstrap method via IBM SPSS Amos 21.0. Results Caregiver burden was significantly negatively associated with both family resilience and breast cancer survivors' individual resilience (both p <.01). Furthermore, individual resilience mediated the relationship between family resilience and caregiver burden (b = −0.052; 95% confidence interval: −.412, −.036). Conclusions The findings suggest that both family resilience and breast cancer survivors' individual resilience may ease caregiver burden among the principal caregivers of breast cancer survivors, and family resilience tends to promote the survivors' individual resilience. Therefore, family resilience and survivors' individual resilience should be enhanced for breast cancer survivors and their family to ease the principal caregivers' caregiver burden.

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Filial piety as a protective factor against burden experienced by family caregivers of diabetic patients in Hong Kong

The quality of parent-child relationships would affect adult children’s attitudes and behaviors toward caring for their ill-parents. Perhaps, this is peculiarly true for Chinese societies where the traditional value of filial piety is emphasized. This study aimed to investigate how filial piety might bear on care burden experienced by Chinese family caregivers of people with type 2 diabetes (T2DM) in Hong Kong. Altogether 150 Chinese family caregivers participated in the survey by completing the Caregiver Burden Inventory, Caregiving Difficulty, and Contemporary Filial Piety Scale and answering some demographic questions. The results indicate that family caregivers of people with T2DM experience more difficulty in social caring than in daily caring and physical caring and their burden mainly centers around the time pressure of being preoccupied with the caregiving work. Caregiver burden is indicated positively by caring difficulty and caregiver’s age and negatively by filial piety. It appears, therefore, that nurturing, treasuring this traditional Chinese value may alleviate burden and stress relating to caring for Chinese family members with T2DM. Implications for counselling practice in supporting Chinese family caregivers of diabetic patients - including assessment, intervention, and cultural sensitivity - were put forward.

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The Effects of the Perception of Being Recognized by Patients With Alzheimer Disease on a Caregiver's Burden and Psychophysical Health

Caring for a patient with Alzheimer disease (AD) represents a real challenge that can have considerable long-term psychological and physical consequences. The aim of this study was to evaluate the impact of the perception of being recognized on both the psychophysical health and the level of burden reported in caregivers of patients with AD. The secondary aim was to evaluate the association between the use of a home care assistance service and the burden and psychophysical health in caregivers. The Caregiver Burden Inventory (CBI), the 36-item Short-Form Health Survey (SF-36), and a visual analog scale (VAS) to evaluate the level of perception of being recognized were administered to 31 caregivers of patients with AD. Data were also collected from patients with AD using the Mini-Mental State Examination (MMSE). The level of perception of being recognized was significantly and negatively correlated with total burden ( r = -0.36; P = .045) and objective burden ( r = -0.53; P = .002). It was also significantly and positively correlated with the MMSE score ( r = 41; P = .02). Regression models showed that only the perception of being recognized, and not MMSE, significantly predicted lower caregiver objective burden scores. Furthermore, the use of a home care assistance service significantly predicted higher caregiver physical functioning. The perception of being recognized by an AD relative significantly predicted the caregiver's objective burden associated with a shortage of time. The use of a home care assistance service also resulted in a promotion in the caregiver's social functioning. Further studies are needed to confirm these results.

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Assessment of the Caregiver Burden of Caregivers of Colorectal Cancer Patients

Aim: To examine caregiver burden of caregivers of patients with colorectal cancer. Method: This is a prospective, cross-sectional, descriptive study. The sample consisted of 162 patients who underwent colorectal cancer surgery between January 1 and June 30, 2015 in the General Surgery ward of Dokuz Eylül University Hospital. Data were collected using the Caregiver Strain Index (CSI) and the Your Reactions to Helping Your Family Member scale (RHFM), which is a component of the Family Care Inventory. Descriptive statistics, Mann-Whitney U, Kruskal-Wallis test, and Pearson correlation analysis were used in data analysis. Results: The mean age of the patients was 58.5±12.7 years and the mean age of the caregivers was 51.8±10.8 years. Of the patients, 51.2% were male, 38.9% (n=63) underwent low anterior resection, and 66.7% had a stoma. Fifty-eight percent of the caregivers were female. The caregivers' mean CSI score was 3.61±3.52 and mean RHFM score was 50.50±9.78. There were statistically significant correlations between caregiving burden and patients' age and stoma status (p<0.05). Patient gender and surgery type did not affect caregiver burden (p>0.05). Caregiver age, duration of care (days), and receiving caregiving assistance were associated with caregiver burden (p<0.05). However, the caregivers' gender, marital status, and education level did not affect caregiver burden (p>0.05). Presence of stoma, caregiver gender, duration of care, and caregiver relationship to patient were found to affect RHFM score (p<0.05). Conclusion: Caregivers of colorectal cancer patients seem to have greater caregiving burden in the postoperative period. For this reason, it is important to provide patients self-care training and encouragement to facilitate their self-care. It will also be beneficial to support caregivers with scheduled education in topics such as stoma care and through support group initiatives

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Changes in caregiving appraisal among family caregivers of persons with dementia: A longitudinal study over 12 months

Aim: The main purpose of this study was to identify changes in both caregiver burden and positive caregiving appraisal over time, as well as factors affecting these variables. Methods: This analysis included 41 in‐home family caregivers who had completed questionnaires at baseline, 6 months, and 12 months. We assessed various caregiver and care recipient characteristics, caregivers' positive appraisal of caregiving, caregiver burden, desire to continue caregiving, severity of care recipients' cognitive impairment, and behavioural and psychological symptoms of dementia. Results: We observed no significant differences in caregiver burden, positive caregiving appraisal, or behavioural and psychological symptoms of dementia across the three measurement times. However, we did find differences in the desire to continue caregiving and in the personal strain and role strain dimensions of caregiver burden. Conclusion: Overall, our study suggests that caregiving service providers should consider support that focuses on improving the subjective caregiving appraisals of caregivers.

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Perceived burden among spouse, adult child, and parent caregivers

Aims: To identify what factors are associated with the caregiver burden of spouse caregivers, adult child caregivers, and parent caregivers. Background: Caregivers often feel stressed and perceive caregiving as a burden. The caregiver burden has been little studied from the perspective of the personal relationship between caregiver and care recipient. Design: Cross‐sectional study. Methods: A random sample of 4,000 caregivers in Finland was drawn in 2014 and those who remained either spouse, adult child, or parent caregivers at data collection were included in the analysis (N = 1,062). Data collection included recipients’ characteristics. Caregivers’ perceived burden was measured using the Caregivers of Older People in Europe index. General linear models were used to explain perceived caregiver burden. Results: Care recipients’ low level of cognitive function was associated with greater perceived burden. Higher quality of support was associated with lower perceived burden among female and male spouse caregivers, daughter caregivers, and mother caregivers. Low cognitive function explained 3–6% and high quality of support 2–5% of the total variation in the burden explained by the models, which ranged between 45–55%. Conclusion: Because cognitive challenges of care recipient are associated with greater perceived burden and high quality of support with lower burden among most of the caregiver groups, high‐quality tailored nursing interventions will be needed especially for the caregivers of the most frail care recipients

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Trends in Informal Care for Disabled Older Americans, 1982-2012

Background and Objectives: We examine trends in informal care from the perspective of both community-dwelling disabled older Americans and their caregivers from 1982 to 2012. We decompose hours of care received from spouses and children according to changes in: (a) the number of potential spousal and child caregivers ("family structure"), (b) the likelihood that existing spouses and children are caregivers ("caregiving propensity"), and (c) the amount of care provided by individual caregivers ("time burden").; Research Design and Methods: We examine two sets of time trends based on distinct samples of community-dwelling disabled older Americans from the 1982-2004 waves of the National Long-Term Care Survey (NLTCS) and the 2000-2012 waves of the Health and Retirement Study (HRS).; Results: Existing spouses' and children's decreasing likelihood of being caregivers led to fewer spousal and child caregivers per disabled older person in the 2004 NLTCS than the 1982 NLTCS. However, the NLTCS and HRS time trends suggest that the amount of care provided by individual caregivers was similar from 1989 to 2012.; Discussion and Implications: Because individual caregivers' time burden has remained fairly constant since at least 1989, advocacy on behalf of policies that promote more and better support for caregivers is appropriate.

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Bidirectional relationship between caregiver burden and neuropsychiatric symptoms in patients with Alzheimer's disease: A narrative review

Objective: The aim of this review is to make a state of the art of the potential influence of neuropsychiatric symptoms (NPs) on caregiver stress and vice versa.; Methods: We searched PubMed and Google Scholar for potential eligible articles.; Results: Patients with Alzheimer's disease (AD) usually need high levels of care in all activities of daily living, most of them provided by family members, friends, or informal caregivers. Caregivers have to cope with both age-related conditions and dementia-related factors. Therefore, caregiving in dementia is more difficult and stressful than caregiving for older adults, affected by other conditions. Neuropsychiatric symptoms, such as anxiety, agitation, disinhibition, aggressive behavior, and sleep disturbances are more closely related to caregiver burden, and associated with more negative outcomes such as decline in their general health, quality of life, and social isolation. Caregiver burden worsens relationship between caregiver and patients with AD. Thus, this relationship may increase the frequency and severity of NPs. Predictors of burden were being a woman, a spouse, and old person with immature coping mechanisms, social isolation, with insufficient knowledge about dementia, poor premorbid relationship with patient, and high levels of negative expressed emotions.; Conclusion: Because of the bidirectional relationship between caregiver burden and NPs, the active management strategies of dementia care should include early identification and treatment risk factors for both caregiver stress and NPs in patients with AD. Therefore, to improve one of them can be exert beneficial for the other.

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Factors Affecting Family Caregivers' Burden and Depression in Home-based Long-Term Care Service under the Long-Term Care Insurance System

Purpose: This study tried to identify changes in family burden after the introduction of the long-term care insurance and to examine the factors influencing subjective and objective caring burden and depression of family caregivers of elders receiving home-based long-term care. Methods: Data were collected from 203 family caregivers of elders from August 1 to 31, 2015 using questionnaires. They were analyzed in descriptive statistics, t test, ANOVA test, and multiple regression analysis. Results: The mean score of depression was 7.24, which suggested mild depression level. The subjective family burden was 2.71 and the objective burden 3.04. The factors affecting depression included subjective burden (t=5.08, p<.001), objective burden (t=2.80, p=.006), time of elderly care per day (t=-3.61, p< .001), caregiving duration (t=3.33, p=.001), age (t=3.13, p=.002), family relationship (t=2.48, p=.014), and economic status (t=1.99, p=.047). Conclusion: The family burden was most important influencing factor on caregiver's depression. Therefore, services and supports to alleviate caregivers' burden in the home-based care should be added to long-term care.

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Caregiver burden among Chinese family caregivers of patients with lung cancer: A cross-sectional survey

Purpose: To investigate the status of caregiver burden and to identify the factors related to caregiver burden among Chinese family caregivers of patients with lung cancer.; Methods: A cross-sectional design with convenience sampling was used in this study. Participants (N = 116) from the oncology inpatient ward at one teaching hospital in Chengdu were recruited from June 2015 to June 2016. The following measurement tools were used: a demographic questionnaire, the Social Support Rating Scale, the General Self-efficacy Scale, and the Zarit Burden Interview. Multiple linear regression analysis was used to identify factors associated with caregiver burden.; Results: The average ZBI score was 38.8 (SD = 13.4). Patient age (p < 0.01), medical and other types of insurance (p < 0.01), disclosure of the diagnosis to patients (p < 0.01), and social support of the caregiver (p < 0.05) were related to caregiver burden. Fifty-three percent of the variance in caregivers' burden was explained by these identified factors.; Conclusions: Caregiver burden was higher among Chinese caregivers of lung cancer patients compared with the results of previous studies. Patient age, medical and other types of insurance, disclosure of cancer diagnosis to the patient, and caregivers' social support are factors associated with caregiver burden. The results suggest that social support, comprehensive healthcare insurance initiatives, and culture-based communication skill training are potential areas for future intervention.

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The influence of the individual neuropsychiatric symptoms of people with Alzheimer disease on family caregiver distress-A longitudinal ALSOVA study

<bold>Objectives: </bold>Family caregivers (FCs) face a variety of demands while caring for persons with Alzheimer disease (AD). Longitudinal studies identifying the specific AD-related neuropsychiatric symptoms (NPS) that contribute to FC distress are rare. We analyzed which NPS in association with care recipient and caregiver demographic factors are associated with FC psychological distress over a 36-month follow-up period.<bold>Design: </bold>This is a longitudinal study with annual follow-up. Participants were people with AD (n = 226) and their FCs (n = 226).<bold>Measurements: </bold>The Neuropsychiatric Inventory was used to assess NPS, and The General Health Questionnaire was used as a measure of caregiver distress. The effect of NPS on FC psychological distress over time was analyzed using a linear-mixed effect model.<bold>Results: </bold>Delusions (P = .003), agitation (P < .001), and sleep disturbance (P = .005) are associated with FC psychological distress. One of four people with AD developed delusions and agitation during the early stages of the disease. Sleep disturbances increased over the follow-up time. A marital relationship was associated with FC distress, while some prevalent symptoms, such as depression, did not affect distress.<bold>Conclusions: </bold>Delusions, agitation, and sleep disturbances may cause distress to the FCs of persons with AD, especially if they live together. Clinicians should meet with FCs regularly and recognize those FCs at risk for a decline in psychosocial health. 

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The association between medical diagnosis and caregiver burden: a cross-sectional study of recipients of informal support and caregivers from the general population study ‘Good Aging in Skåne’, Sweden

Background: Different kinds of chronic diseases might imply different dimensions of caregiver burden, not previously described among the caregivers to recipients from the general elder population. Aim: The main objective was to examine differences in burden between the 343 caregivers to persons with different diagnoses. Methods: A group of elderly recipients of informal care (n = 343) from the general population study ‘Good Aging in Skåne’ (GÅS) Sweden, were divided into five diagnostic groups: dementia (n = 90), heart and lung diseases (n = 48), stroke (n = 62), fractures (n = 66), depression (n = 40) and the group “other”, consisting of different diagnoses (n = 37) according to ICD-10. Differences in burden were analyzed using the Caregiver Burden Scale (CBS), a 22-item scale consisting of five dimensions: general strain, isolation, disappointment, emotional involvement and environmental burden. A total burden index comprises the mean of all the 22 items and a higher score indicates a higher burden. Results: The most common diagnosis associated to caregiving was dementia and fracture and the median hours weekly for informal support with instrumental ADL for the five diagnostic groups ranged from 7 to 45 h for spouses and from 4 to 7 h for parents. The highest proportion of caregivers scoring high total burden was seen among recipients with dementia (50%) and depression (38%); the OR for high total burden for the dementia group was 4.26 (2.29-7.92) and depression group 2.38 (1.08-5.24) adjusted for covariates like age, gender and ADL and these two groups had higher self-perception of burden in all the dimensions, especially the dimension’s emotional burden and strain. Conclusion: Informal support constitutes a substantial time for instrumental ADL for the diseased elders. Caregivers to persons with dementia and depression experience high burden.

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Negative repercussions of caregiving burden: Poor psychological well-being and depression

Objectives: To compare depression and psychological well-being between caregivers of schizophrenic patients and non-caregivers and to study the burden of caregiving as a relative risk for depression and psychological well-being.; Methods: This cross sectional comparative study was conducted at International Islamic university Islamabad from January to September 2017. Fifty informal caregivers of schizophrenic patients from 19 to 55 years of age were included in the study. The control group consisted of age and socio-economic status matched healthy volunteers who did not have any psychological or medical patient at home needing care and assistance. For measurement of study variables i.e., burden of caregiving, depression and psychological well-being, instruments used were Zarit Burden Interview (ZBI), The Beck Depression Inventory (BDI) and Warwick-Edinburgh Mental Well-Being Scale (WEMWBS) respectively.; Results: Results were analyzed using MANOVA followed by One-Way ANOVA. Findings indicated that informal caregivers of schizophrenia have greater depression and poor psychological well-being in comparison to the non-caregiver controls. Association of caregiving burden with psychological well-being and depression was calculated using Chi Square test and relative risk.; Conclusion: Caregiving adversely affects informal caregivers' mental health and wellbeing. Informal caregiving is a burden for the caregivers; health status of family members involved in caregiving should be routinely assessed to enhance their health-related quality of life.

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The effects of a multidisciplinary education course on the burden, health literacy and needs of family caregivers

Chronic diseases are mostly managed by family caregivers that often face the "caregiver burden". This study aimed to understand whether a multidisciplinary theoretical-practical training course could influence the burden, health literacy and needs of caregivers. Seventy-six familial caregivers were asked to complete the Caregiver Burden Inventory-CBI, Caregiver Needs Assessment-CNA, and Health Literacy Questionnaire-HLQ, before and after the course. A significant decrease in CBI and an increase of CNA were observed. However, a significantly higher rate of CBI decrease and a lower increase of CNA were detected in the neurological compared to the oncological group (p = 0.001). Moreover, the ability of the participants to look for and find health information significantly improved. The course contrasted caregivers' burden, increased their search for health information, and revealed their requiring of training and emotional and social support. Caregiver education plays a pivotal role in the management of chronic patients, enhancing the quality of life of both patients and caregivers. Highlights • Caregivers' ability to care for chronic patients can affect patients' outcomes. • Caregivers' needs assessment and education are often neglected in healthcare. • A training course positively influenced caregivers' burden, health literacy and needs. • Caregivers' education is fundamental for the management of chronic patients.

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The Impact of Informal Caregiving for Older Adults on the Health of Various Types of Caregivers: A Systematic Review

Objective: Informal care, the provision of unpaid care to dependent friends or family members, is often associated with physical and mental health effects. As some individuals are more likely to provide caregiving tasks than others, estimating the causal impact of caregiving is difficult. This systematic literature review provides an overview of all studies aimed at estimating the causal effect of informal caregiving on the health of various subgroups of caregivers.; Methodology: A structured literature search, following PRISMA guidelines, was conducted in 4 databases. Three independent researchers assessed studies for eligibility based on predefined criteria. Results from the studies included in the review were summarized in a predefined extraction form and synthesized narratively.; Results: The systematic search yielded a total of 1,331 articles of which 15 are included for synthesis. The studies under review show that there is evidence of a negative impact of caregiving on the mental and physical health of the informal caregiver. The presence and intensity of these health effects strongly differ per subgroup of caregivers. Especially female, and married caregivers, and those providing intensive care appear to incur negative health effects from caregiving.; Conclusion: The findings emphasize the need for targeted interventions aimed at reducing the negative impact of caregiving among different subgroups. As the strength and presence of the caregiving effect differ between subgroups of caregivers, policymakers should specifically target those caregivers that experience the largest health effect of informal caregiving.;

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Home Alone Revisited: Family Caregivers Providing Complex Care

The AARP Home Alone study in 2012 was the first national look at how families, neighbors, and friends are managing medical/nursing tasks—that is, the complex care associated with administering multiple medications, changing dressings, handling medical equipment, and providing many other kinds of help that were formerly offered by trained professionals.  (See www.aarp.org/homealone.) Seven years later, this Home Alone Revisited study sought a deeper understanding of what family caregivers who perform medical/nursing tasks experience. Employing an oversampling of multicultural groups, it took a closer look at specific difficult tasks, such as managing incontinence, pain, and special diets. It also offered greater attention to resources and outcomes as well as multicultural, gender, and generational experiences. A nationally representative, population-based, online survey of 2,089 family caregivers provided the basis for our analyses. An organizing framework, qualitative findings, and multivariate analyses provided further insights into the stories these family caregivers told us. Their voices led to our recommendations, found in these pages, for professionals, health care organizations, policy makers, and private-sector stakeholders.

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Care Burden And Quality of Life of Family Members Caring for Cancer Outpatients

Background: Today, most cancer treatment is given in outpatient treatment centers. In this process, family members who are responsible for the primary care of the patient have difficulty coping with the side effects of the disease and the treatment. This can change the reactions of family members to care giving, affecting the physical and psychological health of family members. Aim: This study has been carried to determine the relationship between caregiving burden and quality of life (QOL) of family caregivers of outpatients receiving chemotherapy. Method: This descriptive and cross-sectionalstudy was carried out 120 patients' family caregivers applying to the outpatient center of university to receive chemotherapy. The data were collected through "Personal Information Form", "Caregiver's Stress Index'', " Cancer Patients' Caregiver Family Members' Life Quality Scale (CQOLC) " and by the researchers. Result: It has been determined that the family caregivers being female, having a low level of education, having a job, having lower incomes than their expenses, giving care for their spouses and giving care 21 hours and over daily have the worst QOL. All the family caregivers giving care reported that they live psychological distress while looking after the patient. Due to chemotherapy, all the family members providing care stated to have difficulties while handling the side effects occurred in patients. It was found that 30.8% of the family members could not cope with nausea, 29.1% with fatigue, 24.2% with loss of appetite, and 19.2% with vomiting. Conclusion: By reducing the maintenance burden of family member caregivers, it can be considered that the QOL of both family members and patients may increase.

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Challenges of Family Caregivers of Patients with Mental Disorders in Iran: A Narrative Review

Background: Family caregivers of patients with mental disorders play the most important role in the care of psychiatric patients (PPs) and preventing their readmission. These caregivers face different challenges in different cultures. We conducted this study to determine the challenges of caregivers of patients with mental disorders in Iran. Materials and Methods: This study is a narrative review with a matrix approach conducted by searching electronic databases, SID, IRANMEDEX, MAGIRAN, PUBMED, SCOPUS, Web of Sciences, from February 2000 to 2017. Searched keywords include challenges, family caregivers of psychiatric patient, family caregivers and psychiatric patient, mental illness, families of psychiatric patient, and Iran. One thousand two hundred articles were found in English and Farsi, and considering inclusion and exclusion criteria, 39 articles were examined. Results: The results of the studies show that not meeting the needs of caregivers, burnout and high burden of care, high social stigma, low social support for caregivers, and low quality of life of caregivers were among the most important challenges faced by caregivers. Conclusions: Despite the efforts of authorities in Iran, family caregivers of patients with mental disorders still face challenges. Therefore, the need for all-inclusive support for family caregivers of patients with mental health problems is necessary. 

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Dedication in caring of hemodialysis patients: Perspectives and experiences of Iranian family caregivers

Background: Although dialysis treatment is considered as a life-saving treatment for chronic renal failure patients, the caregivers face challenges in caretaking of these patients. Objectives: This study is aimed to explain the perspectives and experiences among caregivers of the patients undergoing hemodialysis in Iran. Methods: A qualitative design, based on a thematic analysis approach, was used to reach the study aim. In this study, 25 hemodialysis family caregivers were selected by purposeful sampling. The data were gathered through in-depth and unstructured interview and field observation and analyzed by the inductive thematic approach. Results: The three main themes were generated from the analysis of the data indicating that the caregivers face challenges such as heavy burden of care, tension in care, and emotional exhaustion. Conclusion: Caretaking of the hemodialysis patients is constantly accompanied with challenges and concerns regarding the effective care for patients. Health-care providers need to address these concerns based on both patient- and caregiver-focused approaches, rather than only patient focused, to the design and planning for helping the patients and their caregivers.

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A Descriptive Co-relational study on Burden, Social Support and Family Wellbeing among Caregivers of Mentally Ill Patients in Mansik Aarogayashala , Gwalior (M.P.)

As a worldwide phenomenon, no one is immune - mental illnesses affect people of all ages, cultures, educational and income levels. Burden of caregivers of people with bipolar illness reported moderate or great distress in at least in one burden domain. Hence the descriptive co-relational study has been conducted to assess the burden, social support and family wellbeing among caregivers of mentally ill patients in Mansik Aarogayashala , Gwalior (M.P.). Aim of the study was to determine the caregivers' burden as measured by caregivers burden, social support, family well being and find the relationship between care giver burden and social support, care giver burden and family well being and social support and family well being. By using purposive sampling technique collects total 50 samples. The data was collected using demographic proforma, caregivers' burden assessment scale, social support scale and family wellbeing scale by applying the questioning technique. Results revealed that, Maximum number of caregivers had moderate burden (60%), low social support (82%) and perceived high level of wellbeing (48%); 36% had mild burden, 16% had moderate social support and 46% perceived moderate level of wellbeing. Caregiver burden had negative correlation with social support(r=-0.344, P < 0.005) and family wellbeing (r= -0.404, P < 0.005) while there was positive correlation between social support and family wellbeing(r=0.447, P < 0.005). Study concluded that Caregiver burden had a significant negative relationship as social support and family wellbeing decreased, caregiver burden increased. But there was a positive relationship between social support and family wellbeing, family wellbeing increased with increased social support.

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Anxiety and Depression Associated With Burden in Caregivers of Patients With Brain Metastases

Purpose/Objectives: To describe and examine the relationship between caregiver burden and the affective disorders anxiety and depression in caregivers of patients with brain metastases. Design: Cross-sectional, descriptive, correlational. Setting: Moores Cancer Center at the University of California, San Diego.Sample: 56 family caregivers of patients with brain metastases from solid tumors at other primary sites. Methods: Self-administered survey. Main Research Variables: Caregiver burden, anxiety, and depression. Findings: With the exception of caregiver esteem, no statistically significant relationships were noted between impact on schedule, a dimension of caregiver burden, and screening positive for affective disorders. Conclusions: Findings from this study support previous reports indicating that the odds of having anxiety and depressive symptoms are greater in family caregivers who report higher levels of caregiver burden. Implications for Nursing: The identification and management of caregiver burden are important considerations for a comprehensive cancer care program. Addressing the needs of the cancer caregiver, who is at heightened risk for various psychological, physical, financial, and social problems, is increasingly vital.

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Effects of a caregiver-inclusive assistive technology intervention: a randomized controlled trial

BACKGROUND: The principal aim of this study was to investigate whether a caregiver-inclusive assistive technology intervention improved older care recipients' functional autonomy and decreased the perceived burden of their family caregivers compared to customary care. METHODS: The study was a single-blind, mixed-methods, randomized controlled trial with baseline data collection and follow-ups at six, 22-, and 58-weeks after baseline evaluation, which was prospectively registered (ClinicalTrials.gov Identifier: NCT01640470. Registered 11/21/2011). Dyads comprising a care recipient and family caregiver were randomly assigned to either a caregiver-inclusive experimental group (N=44) or a customary-care comparison group (N=46). Eligible care recipients were aged >=55 years and had one or more limitations with mobility or daily activities, and family caregivers provided at least four hours per week of assistance. Outcome measures were administered to both groups at baseline and at the three follow-up time points. The data collectors were blinded regarding participants' intervention group. The primary outcome measures were the Functional Autonomy Measurement System to assess care recipients' functional performance, and the Caregiver Assistive Technology Outcome Measure to assess caregivers' burden. Qualitative interviews examined participants' perceptions of the caregiver-inclusive and customary care interventions. RESULTS: The experimental intervention addressed significantly more dyad-identified problematic activities, but caregiver involvement was evident in both groups and outcomes were not significantly different over time. In both groups, care recipients' functional autonomy declined significantly (P<.01), and caregivers' activity-specific and overall burden decreased significantly (P<.01). CONCLUSIONS: Given the unintended congruence between the caregiver-inclusive and customary care interventions, the overall findings lend support for the provision of assistive technology to reduce caregiver burden. 

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Stigma experienced by family members of people with intellectual and developmental disabilities: Multidimensional construct

Background There is a lack of good-quality instruments measuring stigma experienced by family members of stigmatised people. Aims To develop a self-report measure of stigma among families of people with intellectual and developmental disabilities and examine associations between family stigma and other variables. Method The new Family Stigma Instrument (FAMSI) was tested with 407 family carers, 53% of whose offspring had an autism spectrum disorder in addition to intellectual disability. They also completed measures of subjective well-being, caregiver burden, self-esteem and social support. Results The FAMSI yielded a five-factor structure and had good reliability. Perceived family stigma, caregiver burden and subjective well-being were the strongest predictors of family stigma. Conclusions This instrument can advance our understanding of the impact of stigma on family members. It can also help us understand sociodemographic, psychosocial and contextual variables of both the carer and cared for person that may influence family members' experiences. 

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How much care is enough? carer's guilt and Bergsonian time

Despite devoting their time to another person's needs, many carers paradoxically experience guilt during their caregiving tenure concerning whether they are providing enough care. When discussing the "enough" of anything, what is at stake is that thing's quantification. Given that there are seemingly no quantifiable units of care by which to measure the role, concerns regarding whether enough care is being provided often focus on what constitutes enough time as a carer. In exploring this aspect of the carer's experience, two key parameters emerge; (1) guilt, and, (2) quantified time. The guilt that carers report regarding whether they devote "enough time" to their caring responsibilities can be examined through Henri Bergson's philosophical conception of quantification. By integrating contemporary analyses of carers' guilt from the social sciences, most significantly via the sociology of Rebecca Olson, the relationship between quantified time and guilt becomes apparent. A quantified conception of time frames the assumption that spending more time on caregiving will reduce the amount of guilt felt by a carer. However, whilst care is structured according to quantified, clocked and calendared time, there are not comparable, quantifiable parameters for guilt. This means that suppositions of an inverse relationship between how much time one spends giving care, and how much guilt they will feel in terms of their caregiving, are problematic. These insights become relevant to health care policies via a coherence with calls to make the role of unpaid, caregiving, labour time more visible, and by explaining how understanding quantified time can help policies guide how caregivers negotiate guilt. 

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The Mediating Role of Sleep Quality on Well-Being Among Japanese Working Family Caregivers

The purpose of this study was to investigate whether the well-being of caregivers is mediated by the association between behavioral and psychological symptoms in elderly relatives and the quality of sleep experienced by caregivers using a mediational model. The participants were 105 working family caregivers in Japan. We assessed well-being based on the Kessler Scale 10, self-rated health, and satisfaction in daily life. Our results showed that the well-being in working family caregivers was impacted by the severity of behavioral and psychological symptoms in elderly relatives. Well-being in working family caregivers was also affected by quality of sleep. Maintaining good quality of sleep in working family caregivers is important for reducing caregiver burden and psychological distress, and for improving the balance between work and family life. 

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Psychological Correlates of Burden Among Jordanian Caregivers of Patients With Serious Mental Illness

PURPOSE To examine prediction power of personality traits, expressed emotion, and coping strategies on caregivers' burden. DESIGNS AND METHODS Cross-sectional descriptive correlational design was used to collect data from 196 caregivers using the Self-Administered Questionnaire from Jordanian caregivers of patients with serious mental illness. FINDINGS Jordanian caregivers had a moderate-to-severe burden level (M = 47.1, SD = 11.5). Burden had a significant negative relationship with coping (r = -.15, p = .04) and significant positive relationship with personality dysfunction (r = .16, p = .021). Emotional expression, coping, and personality were found to be significant predictors of burden (F = 5.16, p = .002). PRACTICE IMPLICATIONS Mental health professionals need to address family caregivers in their plans of care.

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A retrospective study of a multicomponent rehabilitation programme for community-dwelling persons with dementia and their caregivers

INTRODUCTION: This study determined whether the multicomponent rehabilitation programme of a memory clinic had positive outcomes on ameliorating everyday functioning, quality of life, mood and behavioural disturbances of persons with dementia and reducing distress and burden of caregivers. METHOD: A retrospective pre-test-post-test study without control group was conducted on the first cohort of persons with dementia (n=30) and their caregivers (n=30), who participated in a programme lasting for a maximum of 1 year with 25 1-hour counselling sessions. The assessment contained an evaluation of everyday functioning in basic, instrumental and advanced activities of daily living, cognition, mood, emotional and behavioural disturbances, quality of life and caregiver burden. RESULTS: Eight participants dropped out prematurely. For persons with dementia (n=22), participating in the programme did not improve everyday functioning and cognition but ameliorated quality of life significantly (Z=-2.7, p=0.006, 95 per cent CI (.003-.005)) and stabilized mood, emotional and behavioural disturbances for 60 per cent or more of them. For caregivers (n=22), the mild to moderate burden of care remained stable or got better for 63.6 per cent of the caregivers. CONCLUSION: This programme appears to be promising and valuable, and might reduce institutionalization rates. Future explorations are recommended to research how participants evolve and to investigate which participants responded in a positive way. 

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A Multicenter Pilot Study of Burden Among Caregivers of Geriatric Rehabilitation Patients With Neuromusculoskeletal Diseases

Purpose: In this study, we aimed to describe the sociodemographic characteristics of caregivers of patients in a geriatric unit and to clarify the relationship between caregiver burden and specific clinical variables in the patients and the characteristics of the caregivers. Design: Cross-sectional multicenter study. Methods: One hundred twenty-three patients and 123 caregiver dyads, with mean ages of 72.5 ± 7.7 years and 51 ± 14.7 years, respectively, were included. The functional, psychological, and cognitive statuses of the patients were determined, and the sociodemographic characteristics of the caregivers as well as the type and duration of caregiving were recorded. Caregivers completed the Caregiver Burden Inventory (CBI) to measure the perceived burden of care. Most patients were female and generally lived with their family. Findings: Most of the caregivers were family members (90%), female (73.2%), primary school graduates (52.8%), and first-degree relatives (73.1%). The average CBI score was 33, and the highest CBI subscores were for time, developmental, and physical burdens. Caregiver burden correlated with the patient’s ambulatory, psychological, and cognitive status and with the caregiver’s age, gender, income level, and duration of caregiving. Conclusions: We have highlighted the relationship between caregiver and patient characteristics in a cohort of elderly Turkish patients with neurological and musculoskeletal disorders. In particular, we have highlighted the heavy caregiver burden in a developing country. Clinical Relevance: Our results may guide the nurses to understand the requirements of caregivers and to help them find suitable resources that would meet their needs to cope with their burden.

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Silent strain of caregiving: Exploring the best predictors of distress in family carers of geriatric patients

Objectives: The aim of this article was to identify the best predictors of distress suffered by family carers (FCs) of geriatric patients. Methods: A cross-sectional study of 100 FC-geriatric patient dyads was conducted. The negative impact of care (NIoC) subscale of the COPE index was dichotomized to identify lower stress (score of #15 on the scale) and higher stress (score of ≤16 on the scale) exerted on FCs by the process of providing care. The set of explanatory variables comprised a wide range of sociodemographic and care-related attributes, including patient-related results from comprehensive geriatric assessments and disease profiles. The best combination of explanatory variables that provided the highest predictive power for distress among FCs in the multiple logistic regression (LR) model was determined according to statistical information criteria. The statistical robustness of the observed relationships and the discriminative power of the model were verified with the cross-validation method. Results: The mean age of FCs was 57.2 (±10.6) years, whereas that of geriatric patients was 81.7 (±6.4) years. Despite the broad initial set of potential explanatory variables, only five predictors were jointly selected for the best statistical model. A higher level of distress was independently predicted by lower self-evaluation of health; worse self-appraisal of coping well as a caregiver; lower sense of general support; more hours of care per week; and the motor retardation of the cared-for person measured with the speed of the Timed Up and Go (TUG) test. Conclusion: Worse performance on the TUG test was only the patient-related predictor of distress among the variables examined as contributors to the higher NIoC. Enhancing the mobility of geriatric patients through suitably tailored kinesitherapeutic methods during their hospital stay may mitigate the burden endured by FCs. 

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Decision making for people living with dementia by their carers at the end of life: A rapid scoping review

Background: There are an increasing number of people living with dementia, as well as an expectation that care decisions are made collaboratively with those with the disease entering the end stage and their families. This has increased the burden on family carers. Aim: To explore the evidence on the decisional support needs of informal carers of people with end-stage dementia. Design: A rapid scoping review was undertaken of peer-reviewed publications between 2000 and 2016, which included all health-care settings and the person's own home. Six databases were searched (CINAHL, MEDLINE, EMBASE, BNI, PSYCHINFO, Web of Science) and all papers meeting the inclusion criteria were read. A thematic analysis was undertaken of the selected papers using a pragmatic approach based on how the papers addressed the research question. Results: Sixty papers were individually appraised, with 40 being included in the review. Of these papers, 11 were literature reviews and 29 were primary studies. The themes identified were: the influential factors in carer decision making, the scope of carer decision making, the conflicts/problems in carer decision making, the resources carers need to make decisions and the impact of carer decision making. Conclusion: To date, the emphasis in dementia care has been on living well with dementia, but realistically there is a need to plan for a 'good death' that includes the person and their carers. There is a need to support people with dementia and their carers to make an advance care plan, while the person with dementia can take part in the decision-making process. This proactive intervention is likely to reduce carer decision burden at end of life and facilitate achievement of death in the person's preferred place, which is usually the home or care home.

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Caregiver burden in Alzheimer's disease: moderation effects of social support and mediation effects of positive aspects of caregiving

Objectives: Although there are many studies on the relationship between patient‐related factors and negative caregiver outcomes, the specifics of this relationship are poorly understood. Aim: to examine whether caregiver social support moderated the relationship between patient factors and negative outcomes for caregivers of community‐dwelling older adults with Alzheimer's disease (AD), and whether positive aspects of caregiving mediated this relationship. Methods: a cross‐sectional study of patients diagnosed with AD from 2 hospitals and 3 communities in Taiyuan, China, and their caregivers. Latent moderated structural equations and the bias‐corrected percentile bootstrap method were used to estimate the parameters of moderating and mediating effects, respectively. Results: Social support significantly moderated the effects of AD patient cognitive function (P < 0.001) and depression (P = 0.001) on caregiver burden. Positive aspects of caregiving completely mediated the association between patient depression and caregiver burden (P = 0.006), caregiver anxiety (P = 0.007), and caregiver depression (P = 0.034). Conclusions: The findings identify social support as a moderator and positive aspects of caregiving as a mediator of the relationship between patient‐related factors and negative caregiver outcomes. The results suggest that health care providers must offer more effective social support for caregivers. In addition, prompt identification of patient and caregiver emotional states could help to improve quality of life.

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Relationship continuity and emotional well-being in spouses of people with dementia

Objectives: Qualitative research has suggested that spousal experiences of discontinuity in their relationship with a person who has dementia (i.e. the relationship is experienced as radically changed) may contribute to heightened feelings of burden, entrapment, isolation, guilt and intolerance of behaviours that challenge. By contrast, continuity in the relationship may contribute to a greater sense of achievement and gratification from providing care. The present study served as a quantitative test of these suggestions. Method: A convenience sample of 71 spouses of people with dementia completed three questionnaires - the Zarit Burden Interview (ZBI), the Positive Aspects of Caregiving measure (PAC) and the Birmingham Relationship Continuity Measure (BRCM). Results: In accordance with the hypotheses, the experience of greater relationship continuity (higher BRCM scores) was correlated with fewer negative emotional reactions to caregiving (lower ZBI scores; rho = −.795) and more positive emotional reactions (higher PAC scores; rho = .764). Conclusions: The study provided some quantitative support for suggestions arising from qualitative research about how perceptions of continuity/discontinuity in the relationship may impact on the caregiving spouse's emotional well-being. Helping couples to maintain a sense of continuity and couplehood may assist their emotional adjustment to dementia.

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Gender effects on components of burden and depression among dementia caregivers

Objective: Previous literature has examined burden and depression predominately as unitary constructs in relation to dementia caregiving. No studies thus far have examined gender differences in the specific components of burden and depression in dementia caregivers. The current study examined whether empirically validated dimensions of caregiver burden differed by gender for dementia caregivers. Methods: The sample consisted of 211 dementia caregivers enrolled in a longitudinal intervention study. Only baseline functioning was evaluated in this study. Levels of burden were assessed using the Zarit Burden Interview (ZBI), and levels of depression were assessed using the Center for Epidemiologic Studies Depression Scale (CES-D). Results: Factor analysis revealed three facets of burden: impact of caregiving on the caregivers’ lives, guilt, and frustration/embarrassment, and four facets of depression: depressed affect, somatic activity, positive affect, and interpersonal feelings. Overall burden (p < .001) and impact of caregiving on the caregivers’ life (p < .001) were significantly higher in females. Overall levels of depression (p = .018), somatic and retarded activity (p = .018), depressed affect (p = .005), and positive affect (p = .012) were significantly higher in females. Conclusions: Findings suggest that distressed male and female dementia caregivers experience caregiving differently. Results from this study could be used to identify gender-specific interventions related to subtypes of burden and depression to optimize quality of life for caregivers.

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Change over 12 years in residential provision for adult persons with intellectual disabilities in Ireland

Purpose: The purpose of this paper is to document the impact of major policy changes and reductions in government funding on residential provision for people with intellectual disabilities (ID) in Ireland. Design/methodology/approach: Ireland is unique in having a national database of people in receipt of services from specialist ID providers. Information on persons in residential settings from 2005 to 2016 was examined in terms of changes in the types of provision over time and broken down by age groups. Findings: From 2011 onwards, cuts in government funding coincided with a continuing reduction in the overall provision of residential accommodation for adults with ID. There was a parallel increase in the number of people living with family carers, especially persons aged 55 years and over. The greatest reduction was in residential centres which was in line with recent policy but this was not matched by an increase in alternative options, with fewer people aged 20-34 living in residential accommodation of any kind. Compared to Great Britain, Ireland has proportionately more residential places with fewer people living independently. Social implications: More Irish families have to continue caring for their adult relatives into their old age. Likewise, those resident in group homes and living independently are growing older which means there is an increased likelihood they will require additional support. Originality/value: This national data set is a valuable tool for monitoring changes in service provision over time and for determining the impact of government policy and funding decisions.

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The family caregiver experience – examining the positive and negative aspects of compassion satisfaction and compassion fatigue as caregiving outcomes

Objectives: Caregiving results in both positive and negative outcomes for caregivers. The purpose of this study was to examine compassion fatigue and compassion satisfaction in family caregivers. Methods: Using a cross sectional descriptive survey design with a convenience sample, 168 family caregivers of individuals with chronic illness completed a web-based survey. Measures included a demographic questionnaire, Caregiver Burden Interview, Brief COPE inventory and Professional Quality of Life (ProQOL). Results: The majority of participants (71%) reported high levels of caregiver burden, moderate to low levels of the compassion fatigue concepts of burnout (59.5%) and secondary traumatic stress (STS) (50%), and moderate levels of compassion satisfaction (82.7%). Regression analyses showed that caregiver burden, time caregiving, coping, social support, and caregiving demands explained a total variance of 57.1%, F(11,119) = 14.398, p < .00 in burnout and a total variance of 56%, F(11, 119) = 13.64, p < .00 in STS. Specifically, behavioural disengagement is a predicator that may indicate early compassion fatigue. Conclusion: Findings suggest that despite high caregiver burden and moderate compassion fatigue, family caregivers are able to provide care and find satisfaction in the role. This study supports the use of compassion fatigue and compassion satisfaction as alternative or additional outcomes to consider in future research.

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Investigating burden of informal caregivers in England, Finland and Greece: an analysis with the short form of the Burden Scale for Family Caregivers (BSFC-s)

Objectives: The burden of informal caregivers might show itself in different ways in different cultures. Understanding these differences is important for developing culture-specific measures aimed at alleviating caregiver burden. Hitherto, no findings regarding such cultural differences between different European countries were available. In this paper, differences between English, Finnish and Greek informal caregivers of people with dementia are investigated. Methods: A secondary analysis was performed with data from 36 English, 42 Finnish and 46 Greek caregivers obtained with the short form of the Burden Scale for Family Caregivers (BSFC-s). The probabilities of endorsing the BSFC-s items were investigated by computing a logit model with items and countries as categorical factors. Statistically significant deviation of data from this model was taken as evidence for country-specific response patterns. Results: The two-factorial logit model explains the responses to the items quite well (McFadden's pseudo-R-square: 0.77). There are, however, also statistically significant deviations (p < 0.05). English caregivers have a stronger tendency to endorse items addressing impairments in individual well-being; Finnish caregivers have a stronger tendency to endorse items addressing the conflict between the demands resulting from care and demands resulting from the remaining social life and Greek caregivers have a stronger tendency to endorse items addressing impairments in physical health. Conclusion: Caregiver burden shows itself differently in English, Finnish and Greek caregivers. Accordingly, measures for alleviating caregiver burden in these three countries should address different aspects of the caregivers’ lives.

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Initiating activities of daily living contributes to well-being in people with dementia and their carers

Objective: Problems with everyday functioning are linked to reduced well-being in people with dementia (PwD) and their carers. However, previous research has almost solely investigated the performance of everyday activities, and global functioning without analysing individual activities. This study explored how deficits in initiating and performing individual activities were associated with carer burden and poorer quality of life of carers and PwD. Methods: Carers of people with mild dementia were recruited via 10 National Health Service Trusts, as well as through attending six carer support groups. Carers were asked to complete the revised Interview for Deteriorations in Daily Living Activities in Dementia 2 (R-IDDD2), and measures on carer burden, well-being, and person with dementia well-being. Data were analysed using correlation analysis. Results: Two hundred and seventy-two carers completed the R-IDDD2. Carers were grouped into those with low or high ratings of well-being based on the mean scores. All but three activities on the initiative and/or performance scale were significantly associated with carer burden and carer and PwD quality of life. Engaging in hobbies and maintaining an active social life were most strongly associated with carer and PwD well-being. Initiating computer use, driving, and medication management were not related to carer burden. Conclusions: Findings from this study can have direct implications for improving care management early in the disease. Post-diagnostic support needs to provide more opportunities for PwD, and their carers, to engage in social groups, whilst interventions targeted at living well with dementia need to particularly improve the initiative of engaging in individual hobbies.

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Caring for an individual with mild cognitive impairment: a qualitative perspective of health-related quality of life from caregivers

Objectives: Little is known regarding the effect that caring for an individual with Mild Cognitive Impairment (MCI) has on health-related quality of life (HRQOL). The authors sought to identify the most important aspects of HRQOL related to caring for an individual with MCI. Methods: Six focus groups were conducted with caregivers of individuals with MCI (n = 32). Qualitative frequency analysis was used to analyze the data. Results: Findings indicated that caregivers most frequently discussed social health, including changes in social roles and an increased need for social support (51.2% of the total discussion). This was followed by mental health concerns (37.9%) which centred on anger/frustration, and a need for patience in the caregiving role, as well as caregiver-specific anxiety. Other topics included physical health (10.0%; including the impact that stress and burden have on medical heath), and caregivers’ cognitive health (0.9%; including memory problems in relation to caregiver strain, sleep disruption, and cognitive fatigue). Conclusions: Findings illustrate the multiple domains of HRQOL that are affected in individuals providing care for someone with MCI. Moreover, the findings highlight the need for extending support services to MCI caregivers, a group that is typically not offered support services due to the ‘less severe’ nature of an MCI diagnosis.

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Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries

Objectives To explore associations between carer burden and characteristics of (1) the informal carer, (2) the person with dementia, and (3) the care support network in 8 European countries. Design Cross-sectional study. Setting People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom). Participants A total of 1223 people with dementia supported by community services at home or receiving day care or respite care and their informal carers. Measurements Variables regarding the informal carer included familial relationship and living situation. Variables relating to the person with dementia included cognitive functioning (S-MMSE), neuropsychiatric symptoms (NPI-Q), depressive symptoms (Cornell depression scale), comorbidity (Charlson Comorbidity Index), and physical functioning (Katz Activity of Daily Living [ADL] Index). The care support network was measured using hours of caregiving (ADLs, instrumental ADLs [IADLs], supervision), additional informal care support, and service receipt (home care, day care). Experience of carer burden was recorded using the Zarit Burden Interview. Logistic regression analysis was used to determine factors associated with high carer burden. Results Carer burden was highest in Estonia (mean 39.7/88) and lowest in the Netherlands (mean 26.5/88). High burden was significantly associated with characteristics of the informal carer (family relationship, specifically wives or daughters), of the person with dementia (physical dependency in ADLs; neuropsychiatric symptoms, in particular nighttime behaviors and irritability), the care support network (hours of caregiving supervision; receipt of other informal care support) and country of residence. Conclusion A range of factors are associated with burden in informal carers of people with dementia judged to be on the margins of LTC. Support for informal carers needs to take account of gender differences. The dual challenges of distressed behaviors and difficulties in ADLs by the person with dementia may be addressed by specific nonpharmacological interventions focusing on both elements. The potential protective effect of additional informal support to carers highlights the importance of peer support or better targeted home support services. The implementation of appropriate and tailored interventions to reduce burden by supporting informal carers may enable people with dementia to remain at home for longer. 

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A Prospective Biopsychosocial Investigation Into Head and Neck Cancer Caregiving

Purpose: Head and neck cancer (HNC) patients suffer from significant morbidity, which may introduce challenging care demands and subsequent stress-induced mind-body interactions for informal caregivers. This prospective study evaluated patient and caregiver predictors of diurnal cortisol rhythm among HNC caregivers during radiation treatment. Method: Patient-caregiver dyads completed measures at radiation treatment start (T1; n = 32) and 5 weeks into treatment (T2; n = 29). Measures included the Functional Assessment of Cancer Therapy-Head and Neck, the Caregiver Quality of Life (QOL) Index-Cancer, the Caregiver Reaction Assessment, the Medical Outcomes Social Support Survey, and the Eating Assessment tool. Patients also received a clinical swallowing evaluation using the Functional Assessment of Oral Intake Scale. Caregiver cortisol concentrations were assessed from salivary samples at T1 and T2. Results: Caregiver cortisol slope became significantly flatter during radiation treatment. Greater caregiver schedule burden was associated with a flatter cortisol slope (b = .35, p = .05) in caregivers at T1. Lower patient functional QOL (b = .41, p = .05) and lower overall caregiver QOL at T1 (b = .39, p = .04) were each separately associated with a flatter cortisol slope in caregivers over treatment. Conclusions: Results suggest the presence of a mind-body interaction in HNC caregivers. Dysregulation in diurnal cortisol rhythm in caregivers was significantly associated with increased caregiver schedule burden and lower patient and caregiver QOL. Targeted interventions developed for HNC caregivers may help to prevent negative health outcomes associated with dysregulated cortisol. 

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Caregiver burden in medical versus psychiatric patients: A cross-sectional comparative study

Background: An informal care-giver is generally an unpaid individual who looks after the personal and medical needs of the patient. India being a country of traditions and family values, this informal care-giver is usually a family member. These care-givers, being untrained in this job undergo tremendous stress. Available research studies the burden individually in the relatives of chronically medically ill patients and those of psychiatrically ill patients. Furthermore the previous research targets the burden in individual diseases. This study stands out as it makes a comparison between the two broad groups, taking into account almost all possible chronic diseases in each group. Methods: This is a cross-sectional analytical descriptive study that was conducted on the family caregivers of chronically medically ill and psychiatrically ill patients, using the Caregiver's Burden Scale. Data were analyzed by SPSS 20 statistical software and Pearson correlation coefficient tests. Significant difference between area of caregiver burden of medicine and psychiatric patients was tested using relative deviate 'Z' of SEDM test at 5% level of significance. Result: There is a significant difference between each category of Caregiver's Burden Scale among chronically medically ill and psychiatrically ill patients. (P < 0.05). Conclusion: The outcome of this study may help the health care providers in designing stress relief programs for primary care-givers. Overall this study may help better delivery systems of care for both the chronically medically ill as well as psychiatrically ill patients, by proper specific framing and psycho education programs for the caregivers of specific chronic illnesses.

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Measuring carer burden in informal carers of patients with long-term conditions

Introduction: The aim of this literature review is to identify the most common tools used to measure burden in carers of people with Parkinson's disease (PD), heart failure (HF), multiple sclerosis (MS) and chronic obstructive pulmonary disease (COPD). Method: Databases such as Medline, PsycINFO, CINAHL and Academic Search Complete were searched. Studies in which carer burden was measured were included. Results: Zarit Burden Inventory and Caregiver Reaction Assessment were most commonly used to measure carer burden, regardless of the chronic condition. A wide range of other instruments were also used. Conclusions: Even though a range of tools are available, further improvements are necessary in order to enable healthcare professionals to identify carers experiencing high burden. 

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Perceived embarrassment and caregiver burden in essential tremor caregivers

Essential tremor (ET) is a progressive neurological disease associated with functional disability, diminished quality of life and, in some individuals, poorer balance, cognitive impairment, depression and sleep dysregulation. Individuals with ET may rely on family members and friends to act as informal caregivers to assist with daily activities and provide emotional support. There is a high prevalence of embarrassment among individuals with ET, which may be a result of the outwardly visible nature of tremor. Studies in populations with outwardly visible disability have shown that perception by caregivers of a care-recipient's social distress can contribute to caregiver burden. We hypothesize that in ET, perception by caregivers of ET participant embarrassment is a predictor for caregiver burden. Data were collected from 57 ET participants and their caregivers. We measured ET participant embarrassment using the Essential Tremor Embarrassment Assessment (ETEA), and measured perception by caregivers of ET participant embarrassment using a modified version of the ETEA. The Zarit Burden Interview was used to measure caregiver burden. Perceived embarrassment was associated with ET participant embarrassment. In linear regression models, perceived embarrassment was a stronger predictor for caregiver burden than measures of ET participant cognitive and physical impairment. The results indicate that perception of ET participant embarrassment can be burdensome for caregivers. Clinicians may wish to address patient embarrassment and perceived embarrassment to better support caregivers and ET patients.

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Policy and advocacy for informal caregivers: How state policy influenced a community initiative

With a growing proportion of elderly in the global population, the role of 'informal caregivers' gains importance. Informal caregivers are unpaid family members or friends who provide assistance to home-dwelling adults with health-related needs or limitations. Internationally, informal caregivers provide important medical support to those with a variety of diseases. While informal caregivers will remain vital to the growing aging population's pursuit of healthy aging, they often suffer from 'caregiver burnout,' a state of physical, emotional, and mental exhaustion caused by their caregiving work. Policy and legislation are needed to diminish the burden on caregivers and to help assure that resources are allocated for these caregivers. We describe an initiative aimed at providing appropriate social support for caregivers by partnering among local organizations, hospitals, and health authorities. 

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Carers, along with patients, should be at the heart of care

Croft appreciates that while caring is a rewarding experience, the responsibility of supporting others can take its toll: indeed, people who provide substantial care are at 50% greater risk of experiencing mental health problems themselves. The burden of caring can be objective and subjective. For carers to fulfil their roles and feel supported doing so, it is essential for nurses to be empathetic and compassionate, and provide information, as well as offering a carer's assessment. Designing services in partnership with patients and carers is at the heart of her aspirations for a service that meets people's needs.

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Symptom burden and life challenges reported by adult chordoma patients and their caregivers

Purpose This study aims to characterize the symptom burden and life challenges that chordoma patients and their caregivers experience. Methods In this cross-sectional study, we analyzed data from the Chordoma Foundation online community survey conducted in 2014. Frequency counts and percentages were calculated to determine the prevalence of self-reported symptoms and life challenges in the sample. We used Fisher's exact test to compare self-reported symptoms among subgroups with different disease status, tumor locations, and treatments received. Results Among the survey participants, 358 identified themselves as chordoma patients and 202 as caregivers. The majority of the patients were over 45 years (72%), male (56%), educated beyond high school degree (87%), and from North America (77%). Skull base was the most prevalent tumor location (40%). Chronic pain (35%) was the most commonly reported symptom followed by depression or severe anxiety (32%) and chronic fatigue (31%). Among patients, the most commonly reported challenges included delayed care (37%), long-term disability (33%), and confusion or unanswered questions about chordoma (28%). For caregivers, grief (55%), delayed diagnosis (47%), and difficulty helping the patient cope with his or her disease (45%) were most common. Conclusions Our study findings suggest a high symptom burden and life challenges among chordoma patients and their caregivers. This study provides preliminary, limited estimates of the prevalence of a wide range of self-reported symptoms and challenges that will inform the assessment of patient-reported outcomes in future clinical trials and help clinicians better manage chordoma patients' symptoms.

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Impact of caregiver activities and social supports on multidimensional caregiver burden: analyses from nationally-representative surveys of cancer patients and their caregivers

Purpose Informal caregivers of individuals with cancer may experience substantial burdens. To develop interventions to support these caregivers, it is crucial to quantify and understand the domains of burdens potentially experienced by caregivers and factors contributing to each domain. Methods Using data from two national surveys, the National Survey of Caregiving (NSOC) linked to the National Health and Aging Trends Survey (NHATS), we identified all participants in the NHATS diagnosed with cancer who had a caregiver participating in the NSOC. Guided by a theoretical model, twenty-two items in the NSOC related to caregiver health, mood and outlook were included in factor analysis to develop scales capturing domains of burden. Multivariable regression analyses examined whether activities performed by caregivers and supports for caregivers were associated with these burden scales. Results Analysis of responses from 373 caregivers of cancer patients identified three scales: emotional burden; psychological burden; and relationship with the patient. Providing assistance managing medical care was associated with increased emotional and psychological burden, while assistance with non-medical issues increased psychological burden and worsened relationships with patients. Caregiver provision of direct patient care activities was also associated with increased burden but improved relationships with patients. Use of caregiver supports showed mixed associations with burden. Conclusions Using a nationally-representative sample of cancer patients and their caregivers and brief publicly-available survey questions, we present three scales addressing different aspects of caregiver burden that are responsive to caregiver activities and social supports. This may assist in developing and evaluating intervention to decrease caregiver burden.

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Unmet Needs for Family Caregivers of Elderly People With Dementia Living in Italy: What Do We Know So Far and What Should We Do Next?

Care of the elderly with dementia represents one of the major challenges for the modern society worldwide. The burden of dementia care often falls on the family members, entailing heavy psychosocial and economic consequences. The aim of this study was to evaluate the caregiver's perspective concerning the support for disease management on behalf of the physicians and the local Sicilian administrations (Italy), and the burden of care and effects on their lifestyle, to propose new prevention strategies and service for managing dementia and caregiver's burden. Fifty-nine caregivers of Italian elderly people with dementia (mean age, 73; age range: 63-83) were interviewed, and 55 of them completed an ad hoc self-report questionnaire composed of 54 multiple-choice questions. Our findings suggest that caregivers need more information on the disease's management, as well as on how to deal with the stress due to the disease burden. Moreover, a negative perception about the services offered from the local administration emerged. Assistive technology (AT) could be useful in promoting interaction between general practitioners and specialized centers for diagnosis, pharmacological and psychosocial treatments, and in saving costs. Moreover, case manager could follow patients and support family members within the care pathway, besides collecting and sharing information among the different health professionals involved. Further studies should be aimed at investigating whether AT and/or the use of specific educational strategies could be the right approach for meeting the needs of families living with dementia.

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Trajectories of caregiver burden and related factors in family caregivers of patients with lung cancer

Objective This study aimed to (1) identify the changes of 5 domains of family caregiver (FC) burden, overall burden, and its subtrajectories when caring for newly diagnosed advanced lung cancer patients during the first 6 months following cancer diagnosis; and (2) identify the FC‐related and patient‐related factors most associated with the overall FC burden and each of its subtrajectories. Methods A total of 150 newly diagnosed advanced lung cancer patient‐FC dyads were recruited from a Taiwanese medical center. The overall FC burden was evaluated 4 times: before treatment, and 1, 3, and 6 months after treatment. The potential subtrajectory of the caregiver burden was investigated by latent class growth analysis. The FC‐related and patient‐related factors having the greatest effect on the overall FC burden and its subtrajectories over time were identified by generalized estimating equations. Results The highest level of burden domain was “Impact on daily schedule” over time. Generally, most of the FC reported a moderate level of overall burden over the investigation period. Three subtrajectories of the overall FC burden over time (% caregivers) were identified: high burden (34.7%), moderate burden (56.0%), and low burden (9.3%), respectively. The self‐efficacy of FC was the strongest factor related to the changes of the FC's burden and burden in each subtrajectory. Conclusion The results support the existing and different types of subtrajectories of the FC's burden. Health care professionals should provide care based on those differences. Further research to test interventions which integrate those important factors related to FC's burden, particularly FC's self‐efficacy, is strongly suggested.

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Carer's burden of peritoneal dialysis patients. Questionnaire and scale validation

Introduction Carers of peritoneal dialysis patients may suffer from burden, the characteristics of which differ from burden due to dementia, cancer or other dependent conditions. Aims To ascertain the reliability and validity of the Peritoneal Dialysis Carer Burden Questionnaire (PDCBQ), previously created, and to design the burden scale. Methods Observational, multicentre study of carers and patients on peritoneal dialysis for more than 3 months. Sociodemographic characteristics of patients and carers, patient dependency, perceived health (SF-36) and carer burden (Zarit scale) were recorded, as well as PDCBQ via 3 scales: dependence, subjective burden and objective burden. Results One hundred seven patients and their carers from 8 hospitals were evaluable. Carers were mainly women (83.2%), aged 57.50 ± 14.69 years, and 36.4% worked out of the home. The internal consistency of the Zarit scale and the PDCBQ were high (Cronbach's α between 0.808 and 0.901). Significant correlation was found between the Zarit scale and PDCBQ (r = 0.683). The concordance analysis between three degrees of Zarit scale and PDCBQ tertiles was good or acceptable (Kendall τ-b: 0.570, p < 0.001). The exploratory factor analysis of the main factors revealed 3 factors, which were successfully correlated with the design of the PDCBQ. A new carer burden scale was designed. Conclusions The study shows good reliability with high internal consistency of the PDCBQ. Factorial analysis shows good construct and good correlation, and acceptable concordance with the Zarit burden scale confirmed criterion validity. The questionnaire is suitable to be applied in clinical practice.

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Patterns of carer distress over time in mild dementia

Objective To study the level of carer reported distress in mild dementia, over a 3‐year period. Methods This study is part of the Norwegian DemVest‐study and utilises data from carers of people with mild dementia (n = 223). Those diagnosed with dementia with Lewy bodies (DLB, n = 63) and Alzheimer's disease (AD, n = 97) were included together with other dementia types (n = 63). The Relatives' Stress Scale was used to assess the level of reported distress in carers. Descriptive and a linear mixed effects models including diagnosis, time, and the interaction between time and diagnosis were performed. Results Carer distress in mild dementia increased significantly over time (P = 0.011), particularly from baseline until 2 (P = 0.001) years follow‐up. Carer distress in people caring for those with AD increased significantly, from baseline until 2 (P = 0.047) and 3 (P = 0.019) years follow‐up. Distress in carers of people with DLB was high at baseline and remained relatively stable across the 3‐year period. However, admission to a nursing home during the first year of follow‐up was associated with a significantly lower reported carer distress in those caring for a person with DLB (P = 0.002), compared with those caring for a person with DLB living at home. Conclusion Being a carer to a person with mild dementia is associated with increasing distress. However, the burden of distress changes with the diagnosis, time, and situation, which highlights the dynamic nature of the caring role. Findings have important implications for health services for people diagnosed with mild dementia and their carers.

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Factors emerging from the "Zarit Burden Interview" and predictive variables in a UK sample of caregivers for people with dementia

Background: Caring for persons with dementia (PWD) can create “caregiver burden,” which is associated with negative outcomes for caregivers and PWD. The ZBI (Zarit Burden Interview) is a widely used unitary measure of caregiver burden. However, recent research has found caregiver burden to be multi-dimensional. The purpose of this study was to explore the factor structure of the ZBI within a sample of UK caregivers. A secondary aim was to identify variables that predicted burden dimensions found. Methods: A total of 110 unpaid community caregivers of PWD completed the ZBI. They also completed the EACQ (Experiential Avoidance in Caregiving Questionnaire), DEX (Dysexecutive Questionnaire), PACS (Positive Aspects of Caregiving Scale), and a demographic questionnaire. ZBI data were analyzed via exploratory factor analysis (principal axis factoring). Relationships between burden factors and other variables were studied using Pearson correlations and multiple regression. Results: Analysis identified three burden factors, namely direct impact of caregiving, uncertainty around the future, and frustration/embarrassment. A direct impact of caregiving and frustration/embarrassment has been found previously. Uncertainty over the future is a new factor, which was predicted by adult-child caregiver role, highlighting that spouses and adult children are likely to have different burden experiences. Additionally, uncertainty over the future and frustration/embarrassment were inversely predicted by PACS, suggesting that being mindful of positive aspects of caregiving may function as a protective factor for burden. Conclusions: This study found caregiver burden to be multi-dimensional and uncovered a novel factor in uncertainty over the future, which warrants further exploration. Burden factors were associated with a range of modifiable variables that could be targeted within health and social care interventions to improve outcomes for caregivers and PWD.

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Exploring Informal Caregivers’ Views on Their Perceived Burden

The problem of overburdening is increasing among informal caregivers. Some attention has been paid to relationship factors, positive effects of caregiving, and coping strategies in relation to caregivers’ perceived burdens, as these factors might make valuable contributions. The aim of this study was to thoroughly explore the views, experiences, and interpretations of informal caregivers with regard to these factors, who lived in the southernmost part of the Netherlands. In this qualitative case study design, 26 informal caregivers were interviewed using a semistructured questionnaire. The respondents indicated that having a good relationship with the care recipient, experiencing positive effects of providing care, and using coping strategies reduced their burden. In the future, longitudinal research is warranted to determine the actual contribution of these factors.

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Do attachment anxiety and hostility mediate the relationship between experiential avoidance and interpersonal problems in mental health carers?

Carers of people with mental illness frequently report interpersonal difficulties in their caring relationship, and experiential avoidance likely contributes to these problems. This study aimed to examine the relationship between experiential avoidance and eight interpersonal problem domains amongst lay mental health carers, and tested the mediating role of attachment anxiety and hostility. In addition, an alternative (reverse) mediation was tested in which experiential avoidance played the mediating role. A cross-sectional community-based sample of 145 mental health carers completed a questionnaire containing demographics and measures of interpersonal problems, experiential avoidance, attachment anxiety and hostility. Results indicated the relationship between experiential avoidance and interpersonal problems was fully mediated for the interpersonal problem domains of cold/distant and socially inhibited. Partial mediation was evident for the vindictive/self-centered, non-assertive, overly accommodating, self-sacrificing and intrusive/needy domains. No mediation occurred for the domineering/controlling domain. Alternative (reverse) model findings indicated partial/full mediation for the overly accommodating, domineering/controlling and vindictive/self-centered domains, and no mediation for the remaining five domains. Although tentative, findings suggest a mechanism for the relationship between experiential avoidance and particular domains of interpersonal problems that warrants further investigation. The importance of our data is highlighted by the burden and difficult relationships experienced by mental health carers, that requires targeted and effective psychological treatment.

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Quality of life, anxiety, depression and burden among stroke caregivers: A longitudinal, observational multicentre study

Aim To longitudinally describe stroke caregivers’ quality of life, anxiety, depression and burden and to identify predictors of stroke caregivers’ quality of life, anxiety, depression and burden. Background Caregivers have a key role in stroke survivor care and the first year of caregiving is the most challenging. To give tailored interventions, it is important to capture changes and identify predictors of caregiver quality of life, anxiety, depression and burden during the first year. Design A 12‐month longitudinal study. Data were collected between June 2013–May 2016. Methods Changes in stroke caregiver quality of life, anxiety and depression and burden and their predictors were identified using linear mixed‐effects models. Results The caregivers (N = 244) were 53 years old and mostly female. Caregiver quality of life did not change significantly over the 12 months, anxiety and depression decreased up to 9 months and caregiver burden decreased from baseline to 3 months, then increased up to 9 months. Higher caregiver quality of life was predicted by caregiver younger age, higher education, living with a stroke survivor, survivor older age and higher physical functioning; higher anxiety and depression were predicted by older caregiver age and younger survivor age; higher burden was predicted by caregiver male gender, the caregiver not living with survivor and survivor lower physical functioning. Conclusion The first 9 months of caregiving are particularly problematic for caregivers. The trajectories of the above variables and their predictors may be useful for policy makers, clinicians, investigators and educators to give better care to stroke caregivers and their survivors.

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Recovery for Carers of People with Psychosis: A Longitudinal Population-Based Study with Implications for Social Work

This longitudinal study using the sampling frame of the second Australian prevalence study of psychosis aimed to identify predictors of the health and well-being of care-givers of people with psychosis and inform social work recovery-oriented practice. Ninety-eight carers were recruited at baseline and seventy-eight re-interviewed after one year. Correlational and regression analyses were conducted to identify relationships between carer and service user-related factors and predictors of carers’ health and well-being over time. Carers’ poor health and well-being were predicted by a combination of specific service user-related characteristics and care-giving factors. Carers’ assessment of the functioning of their relative/friend with psychosis at baseline had stronger relationships with their own health and well-being at follow-up than other factors. Carers’ care-giving burden was predicted by their educational levels and their relative/friend’s cognitive levels over time. To achieve improved health and well-being for carers, services need to consider potential deterioration of carers’ physical health over time, to facilitate appropriate referral of carers with physical health problems and provide psycho-social rehabilitation services to improve the functioning of people with psychosis. Findings provide some evidence to support social work recovery-oriented practice in working with people with psychosis and the routine inclusion of carers in such interventions.

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The roles of unmet needs and formal support in the caregiving satisfaction and caregiving burden of family caregivers for persons with dementia

Background: A growing number of studies are emphasizing the importance of positive and negative appraisals of caregiving and the utilization of social resources to buffer the negative effects of caring for persons with dementia. By assessing the roles of unmet needs and formal support, this study tested a hypothesized model for Korean family caregivers’ satisfaction and burden in providing care for persons with dementia. Methods: The stress process model and a two-factor model were used as the conceptual framework for this study. Data for 320 family caregivers from a large cross-sectional survey, the Seoul Dementia Management study, were analyzed using structural equation modeling. In the hypothesized model, the exogenous variables were patient symptoms, including cognitive impairment, behavioral problems, and dependency on others to help with activities of daily living and with instrumental activities of daily living. The endogenous variables were the caregiver's perception of the unmet needs of the patient, formal support, caregiving satisfaction, and caregiving burden. Results: The adjusted model explained the mediating effect of unmet needs on the relationship between patient symptoms or formal support and caregiving satisfaction. Formal support also had a mediating effect on the relationship between patient symptoms and unmet needs. Patient symptoms and caregiving satisfaction had a significant direct effect on caregiving burden. Conclusion: The level of unmet needs of persons with dementia and their family caregivers must be considered in the development of support programs focused on improving caregiving satisfaction.

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Effects of modified 8-week reminiscence therapy on the older spouse caregivers of stroke survivors in Chinese communities: A randomized controlled trial

Objective: Our aim was to evaluate the effectiveness of a modified 8‐week reminiscence therapy on the burden, positive experience, and life satisfaction of older spouse caregivers and the life satisfaction of stroke survivors. Methods: We conducted a randomized controlled trial by using 75 older stroke couples recruited from communities in Zhengzhou, China. We randomly assigned participants to 1 of 3 groups: Group 1 (G1, 25 couples, all attend intervention) and Group 2 (G2, 22 couples, only caregivers attend intervention), who participated in a modified 8‐week reminiscence therapy, and a waiting list (control) group (G3, 28 couples). Interviewers blinded to treatment group assignment administered the life satisfaction to both stroke survivors and caregivers, caregiver burden, and positive experience for caregivers, at preintervention, immediately postintervention, and at 1 month and 3 months after cessation of the intervention. Results: We found a statistically significant interaction between treatment groups and assessment time points for the 4 outcome measures (P < .001). Although the effects were decreased after intervention at 1 month, the improvement in caregivers' positive experience, life satisfaction, burden, and life satisfaction of stroke survivors were still significant (P < .001). Conclusions: The use of a modified 8‐week reminiscence therapy in this study sample improved the life satisfaction of stroke survivors and their spouse caregivers, improved the positive experience of caregivers, and decreased the burden of caregivers.

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Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learning disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well-being both of people with LD and their informal carers. Individuals with LD have lost social support and are experiencing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for further discourse and research on the effects of austerity on people with LD and their family carers.

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Holding Up More Than Half the Sky

In recognition of the contributions that women made to Chinese society, Mao Zedong said that “women hold up half the sky.” In my family of origin, I am 1 of 5 children. Our ages range from mid-70s to early 60s. On Mother’s Day 2017 our mother “went home” following 2 years of steady decline. Mom lived on her own for 34 years, and she did quite well managing her affairs, keeping house, and visiting her children who were scattered around the country. But failing eyesight, hearing loss, and an inability to maintain personal hygiene and adequate nutrition and hydration began to take hold.

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Characteristics associated with family money management for persons with psychiatric disorders

Background: Persons with psychiatric disorders (PD) commonly have their money officially or unofficially managed by others, with money managers most commonly being family members. Aims: (i) Identify characteristics of persons with PD, adult family members, and interactions with each other significantly associated with family money management (FMM). (ii) Identify significant differences in aforementioned characteristics between official versus unofficial FMM. Methods: Five hundred and seventy-three adults residing in USA with an adult relative with PD completed a survey. Results: Among persons with PD, FMM was positively associated with lower income, diagnosis of schizophrenia/schizoaffective or bipolar disorder, psychiatric hospitalization, and arrest history. FMM was negatively associated with family members having a mental health diagnosis. FMM was positively associated with interaction characteristics of co-residence, financial assistance, caregiving, and use of limit-setting practices. Compared to official FMM, when unofficial FMM was present, persons with PD were less likely to have been psychiatrically hospitalized or to have regularly attended mental health treatment. When unofficial FMM was present, adult family members were less likely to be a parent of the person with PD. Conclusions: Practitioners should assess the level of burden experienced by family money managers and assess and address with family money managers the use of limit-setting practices.

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Functional Decline and Emotional Elder Abuse: a Population-Based Study of Older Korean Adults

Elder abuse is an increasingly prevalent issue in South Korea. The current study examines the association between functional impairment and emotional abuse victimization in Korean adults 65 and older. We also examines the mediating roles of diverse aspects of family resources (i.e., older adult’s self-esteem, family cohesion, family assistance, contact with friends/neighbors, and participation in social activities) in the aforementioned association. We analyzed 9691 community-dwelling older Koreans from a population-based survey of the 2009 Survey of Elderly Care and Welfare Need. We conducted a path analysis to analyze the mediational hypothesis. About 11% of the study sample reported experiencing emotional abuse by a family member in the past year (n = 1082). The results of the mediational analysis showed that greater ADL/IADL limitations were associated with (a) reduced self-esteem and (b) receiving more assistance from family, which were ultimately associated with increased risk of emotional abuse victimization. Elder abuse is a family crisis that may occur as a result of maladaptation to the heightened long-term care needs of older family members. Practitioners should take into account older adults’ vulnerability in terms of the loss of adaptive resources in the face of functional decline. This study further supports the importance of relieving the burden of family caregivers to avoid the incidence of emotional elder abuse.

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Qualitative Analysis of Faith Community Nurse–Led Cognitive-Behavioral and Spiritual Counseling for Dementia Caregivers

This article presents themes emerging from semistructured interviews with dementia family caregivers in rural communities who participated in an integrative, cognitive-behavioral and spiritual counseling intervention, and with faith community nurses (FCNs) who delivered the intervention. The primary objectives of the counseling intervention were to ameliorate dementia caregivers’ depressive affect and the severity of their self-identified caregiving and self-care problems. The qualitative portion of the study was intended to elicit caregivers’ and FCNs’ perceptions of the benefits and drawbacks of the intervention. We conducted interviews with seven FCN/caregiver pairs 4 times during the 6-month counseling process, totaling 56 interviews. Themes emerging from the interviews included caregivers’ perception of burden and care partners’ problem behavior; formation of therapeutic alliance between FCNs and caregivers; problem-solving skills, tools, and resources; caregivers’ use of problem-solving strategies; spirituality in caregiving and counseling processes; FCNs’ prior professional experience; and caregiver and FCN time constraints.

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The moderating role of the amount of caregiving tasks on the relationships between dementia caregivers’ characteristics and outcomes

Aim This study identified the moderating role of the amount of caregiving tasks on relationships between dementia family caregivers’ characteristics (age, education, etc.) and outcomes (burden, etc.). Design A cross‐sectional analysis of surveyed data. Method A convenience sample of 369 family caregivers (151 males, 218 females) aged 20 years or older was recruited from 10 cities in the southern area of South Korea. Data were collected from November–December 2011. Measures of caregiver burden, perceived health status and emotional distress of caregivers related to the memory‐behaviour problems of the care recipient were used to assess the outcomes of family caregivers of older adults with dementia. Results The amount of caregiving tasks has a moderating effect on the relationships between caregivers’ characteristics (such as living with the recipient and duration of caregiving) and the caregiver burden. The interaction between the amount of caregiving tasks and status of living with recipient was significant in relation to the emotional distress of caregivers related to the memory‐behaviour problems of the care recipient with dementia; however, there was no effect of the amount of caregiving tasks on the relationships between caregivers’ characteristics and perceived health status. Conclusion The amount of caregiving tasks can have a moderating role in the caregiving stress model. Intervention programs need to be developed and implemented to reduce negative outcomes of family caregivers, particularly those living with older adults with dementia.

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Benefits and burdens: family caregivers' experiences of assistive technology (AT) in everyday life with persons with young-onset dementia (YOD)

Background: People with dementia and their family caregivers may benefit from assistive technology (AT), but knowledge is scarce about family carers’ (FC) experiences and involvement in the use of AT in everyday life. Aim: To examine the FC roles and experiences with AT as means of supporting people with young onset-dementia (YOD). Method: Qualitative interview study with follow-up design. Repeated semi-structured interviews were conducted with 13 FC of people with YOD, participating in an ongoing intervention study investigating the families’ use and experiences of AT in everyday life. Results: Six main themes emerged: (1) timely information about AT; (2) waiting times; (3) AT incorporated into everyday living; (4) AT experienced as a relief and burden; (5) appraisal of AT qualities and (6) the committed caregiver. Conclusions: The study found benefits for the FC, especially with simply designed AT, but also several barriers for successful use. A committed caregiver is vital throughout the process. Users will need professional advice and support, and occupational therapists may have a significant role in the process. Interventions implementing AT must be based on analysis of the needs of the person with YOD and the carers: their capabilities, preferences, embodied habits, and coping strategies.

Implications for Rehabilitation

  • Committed family carers (FC) play an important, often decisive, role in providing support for the person with young-onset dementia (YOD, onset <65 years) to use and benefit from the AT.
  • The simpler the AT, the better. The AT should be introduced at “the right time”, before the cognitive and adaptive reduction is too great. The “window” for implementation may be short.
  • AT has potential to ease caregiving and give relief for FC. However, many barriers, difficulties and problems must be attended to.
  • A system for individualized support over time is necessary for implementing AT for this group.
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Widening the net: Exploring social determinants of burden of informal carers

Objectives: Providing care for a person with dementia or other chronic illness at home often places stress on the primary caregiver. In an Irish population, ~67% of carers reported experiencing extreme physical or mental tiredness. This study aimed to identify factors that influence carer burden and identify the sub-populations of carers who are most susceptible to burden. Methods: Consecutive carers referred to a local carers’ support organisation completed the following measurements: the Neuropsychiatric Inventory, Zarit Burden Interview, Social Network Index, General Health Questionnaire, Short Form Survey, Hamilton Depression Rating Scale, Brown’s Locus of Control scale and provided demographic data on themselves and their patient. Results: The sample consisted 53 carers, mean age: 64.5±11.7, of whom 43 (81.1%) were females. A linear regression model found significant independent (p<0.05) factors for carer burden were: increased behavioural problems of the patient, carer characteristics including female gender, younger age, high number of contacts, lower physical functioning and emotional problems, while protective factors were marriage and higher number of embedded networks. Conclusions: The ability to predict which carers are more susceptible to burden allows service providers to more quickly and accurately identify ‘higher risk’ carers, facilitating routine check-ups by physicians and carer support services.

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Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis

Objectives Amyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course. Design In an open-ended question as part of a semistructured interview, caregivers were asked what would help them in their role. Interviews took place on three occasions at 4-month to 6-month intervals. Demographic, burden and quality of life data were collected, in addition to the open-ended responses. We carried out descriptive statistical analysis and thematic analysis of qualitative data. Setting and participants Home interviews at baseline (n=81) and on two further occasions (n=56, n=41) with informal caregivers of people with ALS attending the National ALS/MND Clinic at Beaumont Hospital, Dublin, Ireland. Results The majority of caregivers were family members. Hours of care provided and caregiver burden increased across the interview series. Thematic analysis identified what would help them in their role, and needs related to external support and services, psychological-emotional factors, patient-related behaviours, a cure and ‘nothing’. Themes were interconnected and their prevalence varied across the interview time points. Conclusion This study has shown the consistency and adaptation in what caregivers identified as helpful in their role, across 12–18 months of a caregiving journey. Support needs are clearly defined, and change with time and the course of caregiving. Caregivers need support from family, friends and healthcare professionals in managing their tasks and the emotional demands of caregiving. Identifying the specific needs of informal caregivers should enable health professionals to provide tailored supportive interventions.

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Changes in Caregivers Lifestyle after Severe Acquired Brain Injury: A Preliminary Investigation

Introduction. Severe acquired brain injury (sABI) is considered the most common cause of death and disability worldwide. sABI patients are supported by their caregivers who often exhibit high rates of psychological distress, mood disorders, and changes in relationship dynamics and family roles. Objectives. To explore lifestyle changes of caregivers of sABI patients during the postacute rehabilitation, by investigating possible differences between primary and secondary caregivers. Primary caregivers spend most of the time with the patient, providing daily care and taking most responsibility for the day-to-day decisions, while secondary caregivers are those who provide additional support. Methods. Three hundred forty-seven caregivers of sABI patients were asked to fill in an unpublished self-report questionnaire to explore their possible lifestyles changes. Results. A statistically significant difference was found between primary and secondary caregivers in time spent in informal caregiving (p<0.001). The primary caregivers reduced all leisure activities compared to secondary carers (p<0.05). Conclusions. By comparing the percentage of leisure activities performed by caregivers beforeand after the patient’s sABI onset, all caregivers showed high percentages of changes in lifestyle and habits, even though primary caregivers reported more negative lifestyle changes than secondary caregivers. Further studies are needed to investigate needs and burden experienced by caregivers of sABI patients during the postacute rehabilitation phase, also in relation to the patients’ outcome, to address support interventions for them and improve their quality of life.

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Caregiver burden in amyotrophic lateral sclerosis: A systematic review

Background: Informal caregivers of patients with amyotrophic lateral sclerosis experience increased levels of caregiver burden as the disease progresses. Insight in the factors related to caregiver burden is needed in order to develop supportive interventions. Aim: To evaluate the evidence on patient and caregiver factors associated with caregiver burden in amyotrophic lateral sclerosis informal caregivers. Design: A systematic review. Data sources: Four electronic databases were searched up to 2017. Studies that investigated quantitative relations between patient or caregiver factors and caregiver burden were included. The overall quality of evidence for factors was assessed using the Grading of Recommendations Assessment, Development and Evaluation approach. Results: A total of 25 articles were included. High quality of evidence was found for the relation between caregiver burden and the factor "behavioral impairments." Moderate quality of evidence was found for the relations between caregiver burden and the factors "feelings of depression" of the caregiver and "physical functioning" of the patient. The remaining rated caregiver factors--"feelings of anxiety," "distress," "social support," "family functioning," and "age"--and patient factors--"bulbar function," "motor function," "respiratory function," "disease duration," "disinhibition," "executive functioning," "cognitive functioning," "feelings of depression," and "age"--showed low to very low quality of evidence for their association with caregiver burden. Conclusion: Higher caregiver burden is associated with greater behavioral and physical impairment of the patient and with more depressive feelings of the caregiver. This knowledge enables the identification of caregivers at risk for caregiver burden and guides the development of interventions to diminish caregiver burden.

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Informal caregiving in head and neck cancer: caregiving activities and psychological well-being

The purpose of this study was to quantify the general cancer support activities that long‐term carers of head and neck cancer (HNC) survivors engage in; and the relationships between these care activities and psychological well‐being. Respondents answered a survey detailing their caring activities, the amount of time that they spent on those activities and how comfortable they felt engaging in them. Psychological well‐being was assessed by the Depression Anxiety Stress Scales‐21. A total of 197 carers took part in the study. The majority (76%) were women, mean age 57.4. Mean time since diagnosis was 6.2 years. In the past month, 45% of carers did not spend any extra time per week helping their relative/friend with general caring activities such as cleaning the house; 31% spent 1–19 hr/week and 23% spent 20 or more hours/week doing so. Most carers were comfortable assisting their relative/friend, though more carers felt uncomfortable assisting with HNC‐specific support tasks (31% uncomfortable helping with medication) compared with general support tasks (7% uncomfortable helping with appointments). Feeling uncomfortable with head and neck‐specific care tasks was a significant predictor of experiencing depression and anxiety.

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"Never at ease" - family carers within integrated palliative care: a multinational, mixed method study

Background: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers’ every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services. Methods: Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project “Patient-centred palliative care pathways in advanced cancer and chronic disease” (InSup-C). Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions. Results: On average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers’ burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures. Conclusions: Data suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the ‘unit of care’ and partner in caregiving, to improve their knowledge about, and access to, and the support available.

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The Effect of a Brief Cognitive Behavioural Stress Management Programme on Mental Status, Coping with Stress Attitude and Caregiver Burden While Caring for Schizophrenic Patients

This experimental study was carried out using a pre-test/post-test control group model to evaluate the effect of a "Brief Cognitive Behavioural Stress Management Programme" (BCBSMP) on mental status, coping with stress attitude, and caregiver burden while caring for patients with schizophrenia. A total of 61 caregivers who provided care for schizophrenia patients at a community mental health centre were included in the study. Caregivers were matched according to gender and scale scores and were assigned to either the study or the control group. Before and after the programme, caregivers in both groups were given the "Demografic Data Form", "Zarit Caregiver Burden Scale", "Coping Attitude Evaluation Scale", "Stress Indicators Scale", and the "General Health Survey-28". Caregivers in the study group were taken to a BCSMP one session per week (each session lasted 120min) for seven weeks. We determined that the stress indicators, the risk of developing a psychological disorder, and caregiver burden decreased and skills related to both the problem-oriented and emotion-oriented aspects of stress increased in the study group after the programme.

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Validation of a model of family caregiver communication types and related caregiver outcomes

Objective: Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types - Manager, Carrier, Partner, Lone - each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes. Method: This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains. Results: Corroboration between fieldnotes and self-reported communication for caregivers ([i]n[/i] = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life. Significance of results: This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test interventions that target specific caregiver types. 

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The Trial of Ascertaining Individual Preferences for Loved Ones' Role in End-of-Life Decisions (TAILORED) Study: A Randomized Controlled Trial to Improve Surrogate Decision Making

Context Patients with terminal illnesses often require surrogate decision makers. Prior research has demonstrated high surrogate stress, and that despite standards promoting substituted judgment, most patients do not want their surrogates to make pure substituted judgments for them. It is not known how best to help loved ones fulfill the surrogate role. Objectives To test the effectiveness of an intervention to help surrogate decision makers. Methods One hundred sixty-six patients (41% with amyotrophic lateral sclerosis and 59% with gastrointestinal cancers) and their surrogates at two university medical centers were randomized to an intensive nurse-directed discussion of the end-of-life decision control preferences of the patient (TAILORED) or a discussion of nutrition (CONTROL) 163 completed baseline interviews and underwent the intervention. Results Twelve patients died during follow-up and 137 dyads completed the study. Post-intervention, using all available data, TAILORED patients and surrogates became more likely to endorse mutual surrogate decision making, that is, a balance of their own wishes and what the surrogate thinks best (adjusted odds compared with baseline for patients = 1.78, P = 0.04 adjusted odds for surrogates = 2.05, P = 0.03). CONTROL patients became 40% less likely to endorse mutual surrogate decision making (P = 0.08), and CONTROL surrogates did not change significantly from baseline (adjusted odds = 1.44, P = 0.28). Stress levels decreased for TAILORED surrogates (impact of events scale = 23.1 ± 14.6 baseline, 20.8 ± 15.3 f/u, P = 0.046), but not for CONTROL (P = 0.85), and post-intervention stress was lower for TAILORED than CONTROL (P = 0.04). Surrogates' confidence was uniformly high at baseline and did not change. Caregiver burden (Zarit) increased from 12.5 ± 6.5 to 14.7 ± 8.1 for TAILORED (P < 0.01), while not changing for CONTROL, yet satisfaction with involvement in decision making was higher at follow-up for TAILORED than for CONTROL (71% vs. 52%, P = 0.03). Conclusion TAILORED patients and surrogates who completed the study adopted a more mutual decision-making style, balancing their own wishes with what the surrogate thinks would be best for them. Surrogates reported less stress and more satisfaction. Confidence was high at baseline and did not change. There was a modest increase in caregiver burden. These findings suggest that interventions like TAILORED might positively impact surrogate decision making.

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Life Interrupted: The Trauma Caregiver Experience

Traumatic injury frequently leads to an abrupt change in physical and psychological functioning; informal caregivers play a significant role in the recovery process in the hospital and at home. The purpose of this study was to describe the range of stressors and burdens experienced by orthopedic trauma family caregivers in the acute care setting, as well as responses and strategies employed. Qualitative, in-depth interviews were conducted in the hospital with 12 family caregivers of severely injured orthopedic trauma patients. Interviews were audiotaped, transcribed, and analyzed to identify the range of experiences and common themes. Data were organized into 4 categories: stressors and needs; barriers; resources; and response. Stressors and barriers included the confusion and turmoil of life in the hospital, exposure to tragedy, difficulty obtaining and understanding information, and a sense that the family was not considered an integral part of the care plan. Factors influencing caregiver coping included access to the patient, provider communication, caregiver internal and external resources, and the presence of staff assisting in negotiation of the complex and unfamiliar hospital system. Understanding the caregiver experience enables nursing providers to build trust and offer effective support and guidance; caregiver-centered systems of information from admission to discharge may facilitate adaptation and improved caregiving.

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If they are OK, we are OK: the experience of partners living with neuromyelitis optica

Aim: Neuromyelitis optica (NMO) is a rare neuro-inflammatory condition characterized by acute relapses causing severe visual or physical disability. The impact on family members and their experiences have not been studied. The study aims were to explore the lived experience of partners of people with NMO and to investigate potential carer burden in this population. Method: A mixed-method design was used; 11 partners of people with NMO completed semi-structured interviews; 54 partners completed Zarit Burden Interview and Hospital Anxiety and Depression Scale. Results: Three qualitative themes influenced partners’ quality of life (QoL): role/relationship; it’s all about them; and the impact of NMO. Life changed dramatically for participants after the first NMO attack, necessitating responsibility for physical, financial, social, and emotional support. As NMO symptoms improved and stabilized, freedom and QoL for spouses also improved, albeit with on-going worries regarding the impact of potential devastating future relapses. Quantitative findings showed mild/moderate carer burden (46%), mild/moderate anxiety (59%), and mild/moderate depression (24%). No partner indicated severe carer burden, anxiety, or depression. Conclusion: Participants regarded themselves as partners rather than carers whom require assessment and support for their emotional and health well-being. Health-care professionals need to acknowledge the important role partners play in the dynamics of the family unit, through greater discussion and inclusion. 

Implications for Rehabilitation

  • NMO has a strong impact on couples, resulting in both physical caregiving needs and anxiety regarding the unpredictability of potential devastating relapses.
  • Partners do not necessarily experience clinically significant “burden”, anxiety or depression, and tools which screen for this may not capture the nature of their experiences.
  • Health-care professionals need to acknowledge, consult, and respect the experience of partners during assessment and implementation of action plans.
  • Partners should be individually assessed based upon the physical and emotional dependency created by NMO to improve their health and well-being.
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Challenges in intergenerational caregiving for frail older people: A multiple case study

Families in Taiwan are considered central in caring for frail older people. However, rapid social changes are reshaping Taiwanese family values and structures. In this study, we explored the challenges of intergenerational families in caring for frail older people in Taiwan. Using a multiple-case study, 32 participants representing 12 families comprising three or more generations participated in individual, semistructured interviews. A grounded theory technique was used for the data analysis. Four themes emerged in the findings: intergenerational and intragenerational disharmony, restrictions in the physical environment, financial caregiving burdens, and lack of support from the healthcare system. The findings can help raise awareness of filial caregiving obligations of aging family members that have shifted from a parent-child dyad to being shared across multiple generations in Taiwan. Intergenerational caregiving for frail older people has become a challenge for policies aimed at keeping the aging population in the community.

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Assessment of Burden Among Family Caregivers of People With Parkinson's Disease Using the Zarit Burden Interview

Context Previous studies have supported the psychometric properties of the 22-Item Zarit Burden Interview (ZBI-22) scale among family caregivers of people with various disorders, including Parkinson's disease (PD). However, its short forms have not been psychometrically tested among PD family caregivers, and available psychometric analyses have not accounted for the ordinal nature of item-level data. Objectives To assess the psychometric properties of the ZBI-22 and its short forms among family caregivers of people with PD, while taking account for the ordinal nature of data. Methods Cross-sectional postal survey ZBI-22 data from 66 family caregiver members (59% women mean age 69.6 years) of a local Swedish PD society branch were analyzed according to classical test theory methods based on polychoric/polyserial correlations. Results Missing item responses were = 5%. Corrected item-total correlations were = 0.42 and floor/ceiling effects were <20%, besides for the briefest (4- and 1-item) short forms (20% and 40% floor effects, respectively). Reliability was good for all scales (ordinal alpha 0.89-0.95). External construct validity was in general accordance with a priori expectations. Short forms demonstrated good criterion-related validity (rs 0.87-0.99) and discriminative ability (area under the curve, 0.91-0.98) relative to the full ZBI-22. Conclusion This study provides support for the reliability and validity of the ZBI-22 and its various short forms for use among PD family caregivers. In studies where caregiver burden is a central outcome, either ZBI-22 or ZBI-12 is suggested for use other short forms can be used when caregiver burden is of less central focus or for clinical screening. 

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P77 Levels of psychological distress and predictors of distress in family carers of patients with cancer at end of life

Background Family carers provide substantial support for patients at end-of-life. It is important to understand how caregiving impacts on carers to guide appropriate interventions to improve carer wellbeing.  The aims of this study were to investigate levels of psychological distress and predictors of distress during end of life care giving in a national sample of family carers of people with cancer. Methods Four-month post-bereavement postal survey of a national census sample of relatives reporting a death from cancer 1–16th May 2015. Retrospective data collected included carer demographics, carers’ psychological distress (GHQ-12), care giving hours and tasks, out of pocket expenses, support from informal and formal care, other demands on carers’ time (work, other caregiving responsibilities, voluntary work), opportunities for respite, patient symptoms and activities of daily living (ADL). Exploratory univariate analyses were used to describe the data and inform multivariate analysis. Results Surveys were completed by 1504 (28.5%) of 5271 carers. Carers’ median GHQ distress score was 7 (IQR 4–9), where a score>=4 indicates ‘caseness’ for psychological distress. Univariate analysis results at p<0.05 indicate that increased hours of caregiving, other caring responsibilities and the patient‘s worsening symptoms and reduced ADL increased distress. Formal support, hours of volunteering and respite were associated with reduced distress. Carer age, sex, work situation and level of deprivation also related to distress. Multivariate analysis indicates that the total hours of care giving, patients’ psychological symptoms and the carer being female was related to increased distress, whilst formal service provision was related to reduced distress. The final model explained 19% of variance in distress. Conclusion A considerable majority of family carers suffer clinically significant levels of psychological distress during end of life care giving. Objective care burden in the form of total hours of caregiving is associated with increased distress. Being female and caring for a patient with psychological symptoms appears to increase distress, whereas support from formal care services can ameliorate distress. Whilst the final model explains a modest amount of variance in carer distress, it indicates that reduction in objective care burden and support from services can have an important, positive impact.

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A carer burden and stigma in schizophrenia and affective disorders: Experiences from Sri Lanka

Objectives: Stigma compounds the burden experienced by family members of those with a mental illness. This study aimed to examine burden experienced by carers of people with schizophrenia or affective disorders and to explore the relationship between carer burden and stigma. Method: A cross sectional descriptive study was conducted with patient-carer dyads involving 67 patients diagnosed with schizophrenia and 51 diagnosed with affective disorder. Carers completed the Zarit Burden Interview (short version) and stigma was measured using the Stigma Scale and the Internalised Stigma of Mental Illness Scale. Results: Carer burden was significantly higher for schizophrenia than affective disorders. Female carers experienced significantly higher burden than male carers. Diagnosis, gender of carer and stigma predicted 22% of the variance in carer burden, with gender identified as a significant predictor. Conclusions: Reducing stigma related to disclosure of mental illness in carers has the potential to reduce carer burden.

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Quality of Life, Stigma and Burden Perception Among Family Caregivers and Patients with Psychiatric Illnesses in Jordan

The literature reported several factors which could impact the quality of life of caregivers and patients with psychiatric illnesses. This study aimed to determine the level of quality of life among a sample of 532 of caregivers and patients with psychiatric illness at two out-patient mental health clinics in Northern Jordan, and to examine the relationships of sociodemographic characteristics, stigma and caregiver perceptions of burden with quality of life. A correlational descriptive design was utilized. Three self-administered questionnaires were used. Results indicated that patients had low to moderate QOL, and they suffered moderate to high stigma. Also, family caregivers perceived low to moderate QOL. Patients' and family caregivers' stigma perception correlated negatively and significantly with WHOQOL-BREF. Family caregivers' burden correlated negatively and significantly with all domains of WHOQOL-BREF, total QOL-100, and self-reported general health. Health care providers should assure the importance of focusing more toward minimizing stigma and promoting physical and general health to maintain a good quality of life of caregivers and patients with mental illnesses.

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Web-based health interventions for family caregivers of elderly individuals: A Scoping Review

Background: For the growing proportion of elders globally, aging-related illnesses are primary causes of morbidity causing reliance on family members for support in the community. Family caregivers experience poorer physical and mental health than their non-caregiving counterparts. Web-based interventions can provide accessible support to family caregivers to offset declines in their health and well-being. Existing reviews focused on web-based interventions for caregivers have been limited to single illness populations and have mostly focused on the efficacy of the interventions. We therefore have limited insight into how web-based interventions for family caregiver have been developed, implemented and evaluated across aging-related illness. Objectives: To describe: a) theoretical underpinnings of the literature; b) development, content and delivery of web-based interventions; c) caregiver usage of web-based interventions; d) caregiver experience with web-based interventions and e) impact of web-based interventions on caregivers’ health outcomes. Methods: We followed Arksey and O’Malley’s methodological framework for conducting scoping reviews which entails setting research questions, selecting relevant studies, charting the data and synthesizing the results in a report. Results: Fifty-three publications representing 32 unique web-based interventions were included. Over half of the interventions were targeted at dementia caregivers, with the rest targeting caregivers to the stroke, cancer, diabetes and general frailty populations. Studies used theory across the intervention trajectory. Interventions aimed to improve a range of health outcomes for caregivers through static and interactive delivery methods Caregivers were satisfied with the usability and accessibility of the websites but usage was generally low and declined over time. Depression and caregiver burden were the most common outcomes evaluated. The interventions ranged in their impact on health and social outcomes but reductions in perception of caregiver burden were consistently observed. Conclusions: Caregivers value interactive interventions that are tailored to their unique needs and the illness context. However, usage of the interventions was sporadic and declined over time, indicating that future interventions should address stage-specific needs across the caregiving trajectory. A systematic review has the potential to be conducted given the consistency in caregiver burden and depression as outcomes.

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The impact of cardiac arrest on the long-term wellbeing and caregiver burden of family caregivers: a prospective cohort study

Objective: The purpose was to gain insight in the functioning of caregivers of cardiac arrest survivors at 12 months after a cardiac arrest. Secondly, the course of the wellbeing of the caregivers during the first year was studied. Finally, factors that are associated with a higher care burden at 12 months after the cardiac arrest were investigated. Subjects: A total of 195 family caregivers of cardiac arrest survivors were included. Main measures: Quality of life (SF-36, EuroQol-VAS), caregiver strain (CSI) and emotional functioning (HADS, IES) were measured at two weeks, three months and one year after the cardiac arrest. Thereby, the caregiver was asked to fill out the cognitive failure questionnaire (CFQ) to evaluate their view on the cognitive status of the patient. Results: Caregiver strain was high in 16 (15%) of the caregivers at 12 months. Anxiety was present in 33 (25%) caregivers and depression in 18 (14%) caregivers at 12 months. The repeated measures MANOVA showed that during the first year the following variables improved significantly: SF-36 domains social and mental health, role physical, role emotional and vitality, caregiver strain, HADS and IES (P<0.001). At 12 months caregiver strain correlated significantly (explained variance 63%, P=0.03) with caregiver HADS (P=0.01), EuroQol-VAS (P=0.02), and the CFQ (P<0.001), all measured at 12 months after the cardiac arrest. Conclusions: Overall wellbeing of the caregivers improves during the first year up to normal levels, but caregivers with emotional problems or perceived cognitive problems at 12 months are at risk for developing a higher care burden. 

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Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients

Background: This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey. Methods: During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient’s admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions. Results: FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for “bodily pain”, FCs’ quality of life (SF-8) was impaired in all subscales. Most FCs (96%) reported clinically significant own distress (DT), with sadness, sorrows and exhaustion being the most distressing problems (80–83%). Moderate to severe anxiety (GAD-7) and depression (PHQ-9) were prevalent in 43% and 41% of FCs, respectively. FCs scored a mean number of 16.3 of 20 needs (FIN) as very or extremely important (SD 3.3), 20% of needs were unmet in >50% of FCs. The mean POS score assessed by FCs was 16.6 (SD 5.0) and satisfaction (FAMCARE-2) was high (73.4; SD 8.3). Conclusions: This pilot study demonstrated feasibility of the questionnaire survey and showed relevant psychosocial burden and unmet needs in FCs during SIPC. However, FCs’ satisfaction with SIPC seemed to be high. A current multicenter study evaluates these findings longitudinally in a large cohort of FCs.

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The impact of the patient post-intensive care syndrome components upon caregiver burden

Objective: To evaluate patient post-intensive care syndrome (PICS-P) and caregiver burden 3 months after discharge from the Intensive Care Unit (ICU) and determine the impact of different components of PICS-P upon caregiver burden. Design: A prospective observational study was conducted over 26 months (January 2013–February 2015). Setting: Medical-surgical ICU and follow-up consultation in Portugal. Patients or participants: Patients discharged after a minimum of 2 days in the ICU. Caregiver inclusion criteria: not paid, written and spoken Portuguese, and agreement to participate in the study. Main variables of interest: In ICU: Patient gender, age, severity of illness (SAPS II) and length of ICU stay. At 3 months caregiver burden, physical (reduced mobility, weakness acquired in the ICU) and psychological components of PICS (anxiety, depression, post-traumatic stress disorder).  Results: A total of 168 caregivers completed the survey (response rate of 69%). A low degree of overburden was reported by 34.5% of caregivers, while 15.5% showed moderate to high levels of overburden. Patient anxiety and depression 3 months after ICU discharge significantly influenced the presence of caregiver burden (p=0.030 vs p=0.008).  When physical components of PICS-P were evaluated, no influence on caregiver burden was observed. Patient demographics, severity of illness and length of stay also failed to influence caregiver burden. Conclusions: The presence of psychological components of PICS-P 3 months after ICU seems to have a negative impact upon caregiver burden. On the other hand, physical problems showed no important impact upon caregiver overburden.

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The socioeconomic within-gender gap in informal caregiving among middle-aged women: Evidence from a Japanese nationwide survey

Caregiving to older people with needs has been mainly dependent on informal care provision by female caregivers. Compared with the care burden gender gap, the within-gender gap in women's socioeconomic status (SES) has attracted less policy attention. We investigated the association between middle-aged women's SES and the likelihood of being a primary caregiver for elderly informal care, focusing on household income, women's marital status, work status, and educational background under the universal and public system of formal long-term care provision in Japan. We used repeated cross-sectional data from nationally representative household surveys conducted between 2010 and 2013 to obtain a sample of 2399 women aged between 40 and 60 years living in the same household as a care recipient. We conducted multiple logistic regression analysis to obtain odds ratios of being a primary caregiver in the household regressed on women's SES variables, adjusting for the characteristics of care recipients and household composition. The results showed that single women with lower education were likely to be primary caregivers when the care recipients had severe levels of care needs, whereas the association was null in the case of care recipients with milder conditions. The results indicated that women's low education and non-married status were related to a higher likelihood of becoming a primary caregiver of severely disabled elderly for reasons other than lower economic power.To emancipate socioeconomically vulnerable women from the care burden, a broader set of social, economic, and welfare policies are needed.

  • Long-term elderly care has mainly been provided informally by women.
  • Our study focused on unequal burden within women across socioeconomic status (SES).
  • Single women with lower education were at risk of heavier caregiving burdens.
  • A broader policy is needed to reduce SES-bound disparity in women's caregiving.
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