Correlates of Positive Aspects of Caregiving Among Family Caregivers of Patients with Acute Myeloblastic Leukaemia

To evaluate the positive aspects of caregiving and its sociodemographic and clinical correlates in family caregivers of patients with Acute Myeloblastic Leukaemia (AML). A total of 30 caregivers of the patients with AML were evaluated on the Scale for Positive Aspects of Caregiving Experience (SPACE), Family Burden Interview (FBI) and Schedule and Caregiver Strain Index (CSI). On the SPACE, the mean score was highest for the domain of motivation for the caregiving role, followed by the domain of ‘caregiving personal gains’, ‘caregiver satisfaction’ and least score was seen in the domain of ‘self-esteem and social aspect of caring’. All the SPACE domains were negatively correlated with financial burden, disruption of routine family activities, disruption of family interaction, physical health and subjective burden domains of FBI. Effect on physical health of others domain of FBI correlated negatively with all domains of SPACE except ‘self esteem and social aspect of caregiving’. FBI total objective burden was negatively correlated with motivation for caregiving role, caregiver satisfaction and total SPACE score. All SPACE domains were negatively correlated with adaptation and inconvenience domains and total CSI score. Lower level of positive caregiving experience is reported by caregivers who experience high level of caregiver burden.     

Predictor of increase in caregiver burden for disabled elderly at home

In order to classify the caregivers at high risk of increase in their burden early, linear discriminant analysis was performed to obtain an effective discriminant model for differentiation of the presence or absence of increase in caregiver burden. The data obtained by self-administered questionnaire from 193 caregivers of frail elderly from January to February of 2005 were used. The discriminant analysis yielded a statistically significant function explaining 35.0% (Rc=0.59; d.f.=6; p=0.0001). The configuration indicated that the psychological predictors of change in caregiver burden with much perceived stress (1.47), high caregiver burden at baseline (1.28), emotional control (0.75), effort to achieve (-0.28), symptomatic depression (0.20) and "ikigai" (purpose in life) (0.18) made statistically significant contributions to the differentiation between no increase and increase in caregiver burden. The discriminant function showed a sensitivity of 86% and specificity of 81%, and successfully classified 83% of the caregivers. The function at baseline is a simple and useful method for screening of an increase in caregiver burden among caregivers for the frail elderly at home.     

Relationship between expression of gratitude by home-based care receivers and caregiver burden among family caregivers

BackgroundsWe focused on the frequency of “gratitude” expressed by home-based care receivers towards family caregivers before they were in the condition that needed care and investigated the relationship with caregiver burden.MethodsThis cross-sectional online survey was completed by 700 family caregivers in Japan. Caregiver burden was assessed using the Zarit Burden Interview. Caregivers with a score of ≤ 19 were defined as having mild caregiver burden, those with a score of 20 to 38 as having moderate, and those with a score of > 38 as having severe. Additionally, caregivers were asked, “How often did you get a ‘thank you’ from your care receiver before they were in a condition that needed care?” Answers were scored using a 11-point Likert scale. Answers with scores 0-2 were defined as low frequency of gratitude, 3-6 as middle, and 7-10 as high.ResultsAmong all caregivers, 233 (33.3%), 229 (32.7%) and 238 (34.0%) accounted for having mild, moderate and severe caregiver burden, respectively. High frequencies of gratitude of 48.9%, 43.7%, and 39.1%, respectively, were concluded with a significantly higher rate in the mild than in the severe caregiver burden group (p = 0.03). The results of multinominal logistic regression analysis, even after adjusting for several factors, show that high frequency of gratitude was significantly associated with caregiver burden (p < 0.01, OR: 0.48, 95%CI: 0.28-0.81).ConclusionsWe found the frequency of gratitude from the care receiver before they were in the condition that needed care was substantially associated with caregiver burden.     

Emotional support from family members and subjective health in caregivers of the frail elderly at home in Japan

This study sought to determine the factors associated with subjective health in caregivers of the frail elderly living at home, using multivariate regression analysis. Data were collected from 130 caregivers of frail elderly persons listed on a roster for utilization of day service or short stay service from two Home Visit Nursing Care Stations, using self-administered questionnaire from January to February of 2005. Family caregivers were defined as co-residents family members who provided a minimum of 1 h of daily care for at least 3 months. Multiple logistic regression analysis was performed to examine the factors associated with subjective health in caregivers of the frail elderly at home. Subjects with good health had less depressive symptom (p=0.001), much emotional support (p=0.003) and low caregiver burden (p=0.03). Multivariate logistic regression analysis showed good health had a significantly positive association with only much emotional support after adjustment for confounders. Of the total effect of emotional support on subjective health, the direct effect (84.7%) was much greater than the indirect effect (15.3%). Results indicate that much emotional support from family member for caregiver is essential for better subjective health in caregivers.     

心理弹性在肺结核患者照顾者负担与生活质量间的中介效应

目的:探讨肺结核患者照顾者照顾负担、心理弹性及生活质量间的关系。方法:以2021年5—6月在河北省胸科医院住院的肺结核患者照顾者为研究对象。按本次调查最大条目数25计算,样本量为最大条目数的5～10倍,考虑20%的无效问卷,样本量估算为150～300名。最终通过整群随机抽样的方法,抽取肺结核患者照顾者200名,作为研究对象。采用一般资料问卷、照顾者负担量表、心理弹性量表、家庭照顾者生活质量量表进行调查。结果:研究最终获得200份问卷,剔除22份无效问卷后,回收有效问卷178份,有效回收率为89.0%。178名肺结核患者照顾者照顾负担得分为(36.50±12.77)分,生活质量得分为(52.74±9.46)分,心理弹性得分为(57.51±15.91)分;Pearson相关分析结果显示,照顾负担与生活质量、心理弹性呈现负相关关系(r=-0.463,P<0.001;r=-0.400,P<0.001);生活质量与心理弹性呈现正相关关系(r=0.522,P<0.001)。心理弹性在照顾负担与生活质量间发挥部分中介效应[β(95%CI)=-0.119(-0.176～-0.069)...     

Assessment of the burden of caregiving for patients with chronic obstructive pulmonary disease

OBJECTIVE: To determine the effect of chronic obstructive pulmonary disease (COPD) on the quality of life of caregivers. DESIGN AND METHODS: A cross-sectional study was carried out with forty-two COPD patients and their primary caregivers. Patients were assessed with the medical outcome survey short form (SF-36), the physical and mental component summary (PCS and MCS), Saint George's respiratory questionnaire (SGRQ), 6-min walking test, and spirometric and blood gas measurements. Caregivers were assessed using the medical outcome survey short form (SF-36), the physical and mental component summary (PCS and MCS), the 5-point Likert scale for measuring caregiver/patient relationships and the caregiver burden scale (CB scale). RESULTS: The majority of caregivers were female (85.3%), married (59%) and had low levels of income and schooling. The mean age was 51.6+/-16 years. Mean caregiver PCS and MCS scores were 45.9+/-10 and 46+/-12, while the mean total burden score was 1.79+/-0.6. The regression analysis showed caregiver/patient relationship quality, caregiver MCS scores and patient PCS scores to be important predictors of burden and explained 63% of the variance. CONCLUSIONS: COPD causes a significant impact on the quality of life of caregivers. The two most important predictors of COPD burden are the relationship between caregivers and patients and caregiver MCS scores.     

Frailty Does Not Impact Caregiver Burden in Patients with Cirrhosis

Background

Frailty is common and is associated with increased mortality, lower quality of life, and higher readmission rates in cirrhotic patients. Not only are these outcomes important, but further understanding the impact of frailty on a caregiver’s life is crucial to better comprehend caregiver burden in cirrhotic patients and develop strategies to improve care for patients and their caregivers.

Methods

A single-center, prospective study was conducted of cirrhotic patients and their caregivers between 4/1/2019 and 11/1/2019. Frailty testing combined aspects from the Fried Frailty Instrument, Short Physical Performance Battery, and activities of daily living. Caregivers completed questionnaires to evaluate caregiver burden using the Zarit Burden Interview (ZBI-12), and perceived social support, using the Interpersonal Support Evaluation List.

Results

In total, 94 cirrhotic patients were included, 50% males with a median age of 63.1 years. The most common etiology of cirrhosis was nonalcoholic steatohepatitis. Frailty was prevalent (45.1%). In total, 12.8% of caregivers reported a high burden based on ZBI-12. There was no association between frailty and caregiver burden, hospitalization rates, or death. However, frailty was associated with a higher number of outpatient GI visits (p?=?0.002). Lower perceived social support among caregivers was associated with a higher caregiver burden (p?<?0.0001).

Conclusion

Frailty is prevalent in cirrhotic patients but is not associated with higher rates of caregiver burden. Low perceived social support among caregivers, however, was associated with higher caregiver burden. It is important to recognize the impact of caregiver burden on caregivers of cirrhotic patients and ensure caregivers have the appropriate support to mitigate burden.

     

Emotional and physical health of informal caregivers of residents at the end of life: the role of social support

OBJECTIVES: The objectives of this study were to examine the relationship between selected decedent and caregiver characteristics, facility-related perceptions, and emotional and physical health of 434 informal caregivers (94% family) of recently deceased residents of residential care/assisted living facilities and nursing homes. We also examined potential mediating effects of social support (informal, staff, and spiritual). METHODS: We analyzed data using linear mixed models. RESULTS: Among caregivers, younger age, female gender, more education, financial burden, other dependents, poorer perceptions of care, and more care involvement were associated with more emotional strain. More staff support also was associated with more emotional strain and partially mediated the relationship between having a trusted staff member and emotional strain. Characteristics associated with poorer physical health included unemployment, financial burden, poorer physician communication, and trusted staff member. Informal social support was directly related to better physical health and mediated the relationships between physical health and both physician communication and financial burden. DISCUSSION: Many characteristics related to end-of-life caregiving outcomes in long-term care are consistent with community-based studies, suggesting that end-of-life caregiving outcomes in long-term care are not markedly different than in other settings. However, the role of staff support may either facilitate or complicate emotional strain and merits additional study.     

Interpreting important health‐related quality of life change using the Haem‐A‐QoL

The Haemophilia Quality of Life Questionnaire for Adults (Haem‐A‐QoL) measures health‐related quality of life (HRQoL) in adults with haemophilia; however, change score thresholds for identifying individuals experiencing a HRQoL benefit have not been appropriately investigated. The objective of this analysis was to derive appropriate HRQoL responder definitions (RDs) for two Haem‐A‐QoL domains that reflect key impairments, ‘Physical Health’ and ‘Sports & Leisure,’ and the Haem‐A‐QoL ‘Total Score’ using anchor‐ and distribution‐based methods. In this analysis, data from adults in A‐LONG and B‐LONG, two Phase 3 clinical studies of rFVIIIFc in haemophilia A and rFIXFc in haemophilia B, respectively, were used. The anchor‐based approach identified Haem‐A‐QoL changes corresponding to EQ‐5D item improvements between baseline and 6 months; the distribution‐based methods examined the magnitude at baseline of one‐half standard deviation and the standard error of measurement. Through triangulation, the most appropriate RDs were derived. Of the 133 A‐LONG and 73 B‐LONG subjects with baseline Haem‐A‐QoL scores, 67 and 51 subjects, respectively, completed the Haem‐A‐QoL questionnaire at both baseline and 6 months follow‐up. Triangulation of anchor‐ and distribution‐based estimates with the observed Haem‐A‐QoL change scores identified a 10‐point reduction in the ‘Physical Health’ and ‘Sports & Leisure’ domains, and a 7‐point reduction in ‘Total Score’ as the RD thresholds most indicative of HRQoL benefit. These empirically derived RDs for two key Haem‐A‐QoL domains and ‘Total Score’ are reasonable and practical thresholds for identifying subjects with notable improvements in HRQoL, and provides HRQoL RDs that can be used for further analysis and interpretation of data from haemophilia clinical trials.     

Life worth living for caregiving and caregiver burden among Japanese caregivers of the disabled elderly in Japan

The aim of this study is to determine the relationship between life worth living and caregiver burden among caregivers in Japan. We used 111 caregivers of frail elders who completed a self-administered questionnaire including the 8 items developed by Arai et al. (J-ZBI) used as a scale to measure subjective burdens and psychological factors used as covariates other than life worth living. Total score (0-32) of the J-ZBI was dichotomized into "high burden" (> or =21 points) and "low burden" (<21 points). Multivariate logistic regression analysis revealed that only life worth living was significantly associated with caregiver burden. The direct effect of life worth living on caregiver burden (92.9%) was much greater than the indirect effect (7.1%). Our findings suggest that the increase of the sense of life worth living may play an important role in the prevention of the development of caregiver burden.     

Caregiver burden and depression among informal caregivers of HIV-infected individuals

BACKGROUND: Few studies have examined the factors associated with depression in informal caregivers of HIV-infected persons. OBJECTIVE: To investigate the relationship between depression and caregiver burden among informal caregivers of HIV-infected individuals. DESIGN: Cross-sectional study using baseline data from an ongoing randomized trial of a supportive telephone intervention. PARTICIPANTS: One hundred seventy-six dyads of HIV patients and their informal caregiver. MEASUREMENTS: Depression was defined as a Beck Depression Inventory >10. A Caregiver Strain Index >6 identified informal caregivers with a high caregiver burden. We used logistic regression to identify characteristics that were associated with depression in the informal caregiver. RESULTS: Informal caregivers were 42 years old (SD, 13), 53% female, 59% nonwhite, and 30% had education beyond high school. Forty-seven percent of informal caregivers were the patient's partner, 18% a friend, and 35% a family member. Twenty-seven percent of informal caregivers had a high caregiver burden, and 50% were depressed. We found significantly greater odds of informal caregiver depression with high caregiver burden (OR, 6.08; 95% CI, 2.40 to 15.4), informal caregiver medical comorbidity besides HIV (OR, 2.32; 95% CI, 1.09 to 4.92), spending all day together (OR, 3.92; 95% CI, 1.59 to 9.69), having to help others besides the HIV patient (OR, 2.55; 95% CI, 1.14 to 5.74), and duration of the HIV patient's diagnosis (OR, 1.01 per month; 95% CI, 1.00 to 1.01). CONCLUSIONS: High caregiver burden was strongly associated with depression among HIV-infected individuals' informal caregivers, who themselves had difficult life circumstances. Informal caregivers of HIV patients may be in need of both mental health services and assistance in caregiving.     

Care Tasks in the Stress Process for Family Caregivers in Urban China

Objectives: To explore the role of care tasks in the caregiving stress process, this study tested the relationships between distinct care tasks, primary stressors, caregiver burden, and depressive symptoms among caregivers.

Methods: The data were collected from a sample of 754 caregivers who provided care for frail, elderly family members in Shanghai, China. Path analysis was conducted to identify the relationships between the three types of care tasks (monetary support, physical care and emotional care), the caregivers’ background, primary stressors, caregiver burden, and depressive symptoms.

Results: The results show distinct paths through the three types of care tasks in the stress process. Caregivers with higher incomes were more likely to provide monetary support to their care recipients. Being a female caregiver and having greater primary stressors were associated with more involvement in physical care, which predicted higher levels of caregiver burden and further exacerbated depression. The cognitive impairment of care recipients was associated with greater emotional care, with the caregivers who provided more emotional care reporting higher levels of caregiver burden but lower levels of depression.

Conclusions: This study underscores the importance of considering different types of care tasks to properly understand caregiving stress across cultures and societies.

Clinical Implications: This study highlights the need for interventions to alleviate the caregiving stress by helping family caregivers understand the importance of emotional care, training them to appropriately meet the psychological and social needs of their care recipients and providing financial support for caregivers with lower income to purchase respite care services.     

Activities of daily living function and neuropsychiatric symptoms of people with dementia and caregiver burden: The mediating role of caregiving hours

ObjectiveDue to the presence of neuropsychiatric behaviors and the decreased ability for activities of daily living (ADLs), family caregivers experience high burden levels in caring for people with dementia (PWD). This study sought to test the mediating role of caregiving hours in association with PWDs’ ability for basic activities of daily living (BADL) function or neuropsychiatric behaviors and caregiver burden.MethodsThis study used two waves of survey data, collected between 2013 and 2016, from 186 PWD–caregiver dyads in a dementia clinic at a teaching hospital in southern Taiwan. Two sets of multiple linear regression models were used to analyze the relationships between the changes in patients’ BADL function, patients’ neuropsychiatric behaviors, caregiving hours in ADL (including BADL and Instrumental ADL), and caregiver burden (measured using Zarit Burden Interview). Bootstrapping methods were used to detect the mediating effects of caregiving hours in ADL if the 95% confidence interval (CI) did not cover 0.ResultsCaregiving hours in BADL mediated the relationship of PWDs’ BADL function and caregiver burden (effect = −0.0137, 95% bootstrap CI = −0.0379, −0.0003). However, such mediating effects were not found in the relationship of PWDs’ neuropsychiatric behaviors and caregiver burden.ConclusionsIn order to relieve caregiver burden, respite care services for caregivers for PWD should target services that assist with PWD’s BADL.     

Positive and negative evaluation of caregiving among three different types of informal care relationships

Based on the caregiver stress model, we examined how care demands, caregiver motivation, coping style and external support are associated with positive evaluation and caregiver burden among spousal, adult child and other types of care relations. Data from a sample of Dutch informal caregivers of 1,685 older persons (55 and older) were analyzed employing multivariate linear regression analyses for each of the care relationship types. Spouses (N = 206) report high positive evaluation and high burden, adult children (N = 1,093) report low positive evaluation, and other caregivers (N = 386) report high positive evaluation and a low burden. Multivariate linear regression analyses showed that motives and external support were important for positive evaluation but the impact varied among types of caregivers, whereas care demands and not asking for help were associated with burden for all types. Only among ‘other’ caregiver relationships, positive evaluation was negatively associated with burden. It is concluded that results confirm the dual nature of caregiving among spouses and children. The care context and motivation of the different types of caregivers explain their differences in care evaluation. Various interventions for types of caregivers are discussed.     

A high sense of coherence protects from the burden of caregiving in older spousal caregivers

ObjectivesCaregiving is often associated with burden and chronic stress. Sense of coherence (SOC) may help the caregivers in coping with their stress and was identified as a positive factor for health outcomes and quality of life. We aimed to study the links between SOC, burden, depression and positive affects among caregivers of frail older patients.MethodsSeventy-nine spousal caregivers were recruited via the geriatric outpatient clinic. Data collected: Zarit Burden Inventory, SOC-13, Geriatric Depression Scale, Caregiver Reaction Assessment (CRA), sleep, time of supervision, Katz Index, Global Deterioration Scale and Neuropsychiatric Inventory. Analyses: Caregiver’s characteristics were analyzed by burden severity and SOC level. Multivariable logistic regressions were used in order to identify the variable that best predict caregiver burden and high SOC.ResultsThe mean age was 79.4 ± 5.3; 53% were women. Among care-recipient, 82% had cognitive impairment and the median Katz Index was 3. Caregivers with a high SOC and an older age reported a lower burden (Odds Ratio (OR) 0.18, 95% confidence interval (CI) 0.04–0.65 and OR 0.87, 95% CI 0.76–0.98, respectively). A higher burden was associated with patient functional limitations (OR 8.69, 95% CI 2.28–40.46).DiscussionHaving a high sense of coherence seems to be a protective factor against the burden. To support caregivers, health providers should recognize the expertise of the caregivers and the meaningfulness of this care situation.     

阿尔茨海默病患者精神行为症状与照料者负担的相关性分析

目的分析阿尔茨海默病(AD)患者精神行为症状(BPS)的临床特点与照料者负担的关系。方法连续纳入江苏省苏北人民医院2015年11月~2017年11月确诊的AD患者43例及其照料者,采用简易智能状态检查量表(MMSE)、蒙特利尔认知评估量表(MoCA)和认知障碍简明评价量表(Cog-12)评估AD患者的认知功能;采用神经精神量表问卷(NPI-Q)评估AD患者BPS;采用照料者负担量表(CBI)评估照料者负担,并进行Pearson相关性分析。结果入选的AD患者MMSE总分(17.3±5.9)分,MoCA总分(13.1±6.4)分,Cog-12总分(24.3±10.6)分,NPI-Q评估患者BPS总严重程度为(2.51±2.26)分;照料者总苦恼程度为(3.23±3.07)分,AD患者照料者的CBI总分为(24.70±13.34)分。NPI-Q评估AD患者BPS严重程度和照料者苦恼程度总分与MMSE评分和MoCA及Cog-12总分不相关(P>0.05)。NPI-Q评估AD患者BPS严重程度总分与时间依赖负担、社交负担、情感负担、CBI总分呈正相关(r=0.439,0.330,0.319和0.386,P<0.05);NPI-Q评估BPS照料者苦恼程度总分与时间依赖负担和CBI总分呈正相关(r=0.417和0.306,P<0.05)。结论AD患者BPS增加照料者的时间依赖负担、社交负担及情感负担。