Caregiver burden and its predictors in adult epilepsy patients.

OBJECTIVE: The aim of this study was to evaluate caregiver burden and factors associated with caregiver burden in caregivers of adults with epilepsy. MATERIALS AND METHODS: This descriptive cross-sectional study was conducted with 107 patients with epilepsy and 107 their primary caregivers. Personal information form including sociodemographic data and Zarit Caregiver Burden Inventory (ZBI), were used for caregivers, and patient information form, Montreal Cognitive Assessment Scale (MoCA), Hospital Anxiety and Depression Scale (HADS), Epilepsy Quality of Life Scale (QoLIE-31) and Stigma Scale were used for patients. RESULTS: Caregiver burden was found to be related to gender (p = 0.047), marital status (p = 0.008), income (p = 0.003), education level (p = 0.05) age at onset of epilepsy (p = 0.025) and type of therapy (p = 0.005). The scale scores for cognitive functions (p < 0.001), stigma (p < 0.001), anxiety (p = 0.001), depression (p = 0.005), and quality of life (p < 0.001) of the patient showed significant correlations with caregiver burden. In addition, caregiver burden was found to correlate with some caregiver characteristics such as caregivers' age (p = 0.041), gender (p < 0.001), education (p < 0.001), income (p = 0.001) and relationship with the patient (p = 0.016). Time spent on caregiving per day was also positively correlated with caregiving burden (p < 0.001). In regression analysis, the gender of the caregiver, the gender of the patient, the stigma level of patient, and the type of treatment were found to be predictors of care burden (p < 0.05, R2 = 0.61). CONCLUSION: It was found that two-thirds of the families of patients with epilepsy experienced varying degrees of caregiver burden. In addition, it was determined that caregiver burden was associated with sociodemographic and numerous psychosocial factors of the patient as well as the caregiver. It is important that both the caregiver and the patient being cared for are closely evaluated in interventions to reduce the caregiver burden in patients with epilepsy.

Effects of dependent care theory-based post-surgical home care intervention on self-care, symptoms, and caregiver burden in patients with primary brain tumor and their caregivers: a randomized controlled trial.

PURPOSE: This study aimed to examine the effect of dependent care theory-based post-surgical home care intervention on self-care, symptoms, and caregiver burden in primary brain tumor patients and their caregivers. METHODS: A parallel-group randomized controlled trial was conducted with patients who underwent surgery for a primary brain tumor between March 2019 and January 2020 in a tertiary hospital and with caregivers who cared for them at home. Eligible patients and caregivers were determined by block randomization. Outcome measures included validated measures of self-care agency (Self-Care Agency Scale), symptoms and interference by symptoms (MD Anderson Symptom Inventory Brain Tumor-Turkish Form), and caregiver burden (Caregiver Burden Scale). Two-way analysis of variance was used in repeated measurements from general linear models compared to scale scores. RESULTS: Self-care agency was significantly higher in the intervention group than in the control group in the first and sixth months after surgery (p < 0.05). The severity of the patients' emotional, focal neurologic, and cognitive symptoms and interference by symptoms were significantly lower in the intervention group than in the control group (p < 0.05). Caregiver burden was significantly lower in the intervention group in the first, third, and sixth months after surgery (p < 0.05). CONCLUSION: Dependent care theory-based post-surgical home care intervention increased patients' self-care and reduced symptoms and their effects. It also reduced the caregiver burden. Dependent care theory can guide the nursing practices of nurses who provide institutional and/or home care services to patients with chronic diseases and their caregivers. TRIAL REGISTRATION: NCT05328739 on April 14, 2022 (retrospectively registered).

Trajectory of health-related quality of life in parents of children treated with epilepsy surgery versus medical therapy.

PURPOSE: Child health-related quality of life (HRQOL) has been shown to improve after epilepsy surgery and is linked to parent HRQOL. We postulated that the HRQOL of parents whose children underwent epilepsy surgery would improve over two years compared to those treated with medical therapy. The aim of the study was to evaluate the trajectory of HRQOL of parents whose children received treatment with epilepsy surgery or medical therapy over two years. METHODS: This multi-center study recruited parents whose children were evaluated for epilepsy surgery. Parents completed measures of care-related QOL (CarerQOL) at the time of their children's surgical evaluation, 6 months, 1 year, and 2 years later. Additional measures included parent anxiety and depression, satisfaction with family relationships, family resources and demands, and child clinical variables. A linear mixed model was used to compare the trajectories of parent HRQOL of surgical and medical patients, adjusting for baseline clinical, parent, and family characteristics. RESULTS: There were 111 children treated with surgery and 154 with medical therapy. The trajectory of parent HRQOL was similar among parents of surgical and medical patients over the two-year follow-up. However, HRQOL of parents of surgical patients was 3.0 points higher (95%CI - 0.1, 6.1) across the follow-up period compared to parents of medical patients. Parents of seizure-free children reported 2.3 points (95%CI 0.2, 4.4) higher HRQOL relative to parents of non-seizure-free children across the two-year follow-up. CONCLUSION: Parent HRQOL did not improve after their children were treated with epilepsy surgery, possibly related to ongoing comorbidities in children.

The mediating role of coping strategies between caregiving burden and pre-death grief among Chinese adult-child caregivers of dementia patients.

AIMS: The objective of this study was to examine the relationship between caregiving burden and pre-death grief, with a specific focus on adult-child caregivers in mainland China. Additionally, the study explored whether coping strategies played a mediating role in this correlation. METHODS: A convenience sample of 320 adult-child caregivers of older parents with dementia from Kunming, mainland China, was recruited for the study. Data were collected using the Chinese version of the Marwit-Meuser Caregiver Grief Inventory-Short Form, the Burden Scale for Family Caregivers, and the Ways of Coping Checklist-Revised. RESULTS: Results using linear regression and multiple mediation analysis with Hayes' process model indicated that caregiving burden was positively related to pre-death grief and that active coping mediated the relationship between them. In the female group, active coping partially mediated the association between caregiving burden and pre-death grief, but in the male group, this mediating effect did not exist. CONCLUSION: The study found evidence supporting the link between caregiving burden and pre-death grief among adult-child caregivers of older parents with dementia in mainland China. Furthermore, the caregiving burden prevented the use of active coping, and this decrease in coping increased the perception of pre-death grief. These associations only existed in the female group. IMPLICATIONS: This paper presented the importance of active coping skills in the dementia caregiving process. IMPACT: The findings of this study emphasize the necessity for health practitioners to provide targeted interventions regarding pre-death grief among dementia caregivers and strengthen caregivers' active coping strategies to reduce their pre-death grief. Community-based and personal care support services should be promoted to alleviate their caregiving burden. REPORTING METHOD: We have adhered to the transparent reporting of evaluations with quantitative design statements and the corresponding checklist was followed. PATIENT OR PUBLIC CONTRIBUTION: 'No patient or public involvement'.

Exploring the associations between competence in dementia care and work attitudes among formal caregivers in nursing homes.

AIMS: Based on the two-factor model of caregiving appraisals, this study aims to (1) investigate the relationships between competence in dementia care and job satisfaction (work attitudes in positive aspect) and turnover intention (work attitudes in negative aspect) among formal caregivers in nursing homes, and (2) examine the mediating roles of positive aspects of caregiving (caregiving appraisals in positive aspect) and caregiving burden (caregiving appraisals in negative aspect) in the above associations. DESIGN: A cross-sectional design was used. Structural equation modelling was employed to test the proposed model. STROBE checklist guides the reporting of this study. METHODS: Using the multistage cluster sampling method, 407 formal caregivers were selected from 43 nursing homes across 7 districts/counties in China. RESULTS: The proposed model shows a good model fit. Competence in dementia care shows significant positive associations with increased job satisfaction and decreased turnover intention among formal caregivers in nursing homes. Caregiving burden and positive aspects of caregiving mediate the relationships between competence in dementia care and both job satisfaction and turnover intention. Furthermore, the relationship between positive aspects of caregiving and job satisfaction is stronger than that with turnover intention, but the relationship between caregiving burden and turnover intention is not stronger than that with job satisfaction. CONCLUSIONS: The results demonstrate that the two-factor model of caregiving appraisals effectively elucidates the associations and underlying mechanisms between competence in dementia care and formal caregivers' work attitudes. Specifically, two crucial conclusions are drawn: (1) competence in dementia care is associated with higher levels of job satisfaction and lower levels of turnover intention among formal caregivers in nursing homes; (2) caregiving burden and positive aspects of caregiving serve as parallel mediators in these associations. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Policymakers and nursing homes managers should implement a series of measures aimed at formal caregivers in nursing home. Specifically, allocating more resources to enhance the competence in dementia care of formal caregivers is crucial, given its significant association with elevated job satisfaction and reduced turnover intention. Besides, positive and negative caregiving appraisals emerge as proximal factors influencing work attitudes of formal caregivers. Therefore, intervention projects focused on formal caregivers in nursing home should target enhancing positive experiences and alleviating caregiving burden. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Translation and validation of the caregiving burden scale for family caregivers of children with cancer in chinese population.

BACKGROUND: Effective response and reducing the burden of family care for children with cancer is critical, and China currently lacks a specific assessment tool. AIMS: This study aimed to translate and validate the Caregiving Burden Scale for Family Caregivers of Children with Cancer (CBSFC-CC) and then test and implement the tool. METHODS: According to the Beaton cross-cultural debugging guide, preliminary Chinese version of CBSFC-CC scale was formed, which was suitable for Chinese language environment and clinical context. Exploratory factor analyses (EFA) and confirmatory factor analyses (CFA) were performed to verify structural validity. Convergent validity, discriminant validity and reliability were also conducted. RESULTS: A total of 529 family caregivers of children with cancer participated in the survey. EFA extracts and combines four factors and explained 65.80% of the total variation. CFA proved that all the goodness-of-fit indicators were acceptable. The Cronbach's alpha of the Chinese version of CBSFC-CC was .96, and the test-retest reliability coefficient was .95. Four dimensions and 29 items were identified in the final Chinese version of CBSFC-CC. CONCLUSION: The chinese version CBSFC-CC is scientifically reasonable and has good reliability and validity, which can be applied to the investigation of the nursing burden of family caregivers of children with cancer in China.

Caregiving intensity and duration, cardiovascular disease, and race/ethnicity in family caregivers of persons with dementia.

We investigated if caregiving intensity and duration affected cardiovascular disease (CVD) risks and diagnosis and whether the relationship differed by race and ethnicity in family caregivers (FCGs) of persons with dementia. We conducted a secondary analysis of the 2015-2020 CDC Behavioral Risk Factor Surveillance System data using a logistic regression analysis. A total of 6132 dementia FCGs were included. We found that the more time FCGs spent providing care per week (intensity) or over time (duration), the more likely they reported CVD risks and diagnosis. However, the associations between caregiving intensity and CVD risks and diagnosis did not differ by race and ethnicity, nor did the associations between caregiving duration and the outcomes. These findings suggest future studies should be conducted to develop preventive strategies for FCGs' cardiovascular health. Further work is needed to identify the impact of race and ethnicity on the relationship between caregiving conditions and CVD with larger samples of racial and ethnic minorities.

Assessing Caregiving Burden in Family Caregivers of Depression and Schizophrenia in Pakistan.

BACKGROUND AND OBJECTIVE: Care for family members is a significant characteristic of families in South Asia. A family is one unit, and every other member is emotionally connected and expected to take care of each other. However, the provision of care to a family member with mental illness can be physically as well as emotionally exhausting and distressing for the Family Caregiver. The present study aimed to investigate the caregiving burden in family caregivers of depression and schizophrenia. METHOD: For this cross-sectional research, a purposive sample of 80 Family caregivers taking care of at least one family member with mental health problems of depression (n=40) and schizophrenia (n=40) were recruited for the present study. The age range of the sample was 15 to 60 years. All the respondents were literates who could read and write in Urdu. The scale used to measure the caregiving burden was Zarit Caregiving Burden Scale. The data was collected from the male (n=22) and female (n=58) family caregivers. To access data, family caregivers were approached at the psychological services clinics of Rawalpindi and Islamabad in private and public sector hospitals. RESULTS: The data were analyzed through descriptive and t-test analysis. Analyses of the data revealed that family caregivers of schizophrenia had a greater caregiving burden as compared to family caregivers of depression. Results also showed that females reported a higher caregiving burden as compared to male family caregivers. CONCLUSION: Family caregivers of schizophrenia undergo the severe burden of care and distress, and they may be considered a high-risk group for the development of mental health problems. Comprehensive intervention programs may be developed to involve them and safeguard their mental health.

"In God We Trust": An Exploratory Study of the Associations Between Religiosity and the Caregiving Experiences of Parents of Children with Rare Diseases in Poland.

Most children with a rare disease are cared for by their family members but parenting such a child is extremely demanding due to the complexity and severity of symptoms, with serious physical, emotional, social, and financial consequences for caregivers. Although religion may serve as a positive coping strategy, little is known about its role in helping caregivers manage the stress related to the burden of caregiving in Poland. Therefore, we surveyed 925 Polish family caregivers of children with rare diseases to understand the association between caregivers' religiosity and their caring experiences. The findings suggest that parents' religiosity is associated with a more positive caregiving experience, perceived quality of life, and experienced caregiving burden. While religious caregivers reported experiencing less distressing emotions and stressed the encouraging impact of their child's disease on their life more often, non-religious caregivers experienced role captivity and role overload more frequently. Since religion may serve as a source of strength and a protecting factor against mental health problems and the burden of caregiving, healthcare professionals should be aware of the importance of religious and spiritual care, and caregivers' religiosity should be considered an integral part of a holistic approach.

The Burden and Quality of Life in Caregivers of Individuals With Stroke During the COVID-19 Pandemic in Turkey: A Cross-Sectional Study.

This study investigated the caregiving burden, quality of life and life satisfaction of caregivers of individuals with stroke during the pandemic period. A descriptive a study was performed with a sample of caregivers (n = 80) of inpatient individuals with stroke in Kayseri, Turkey. The Bakas Caregiving Outcomes Scale, Short Form Health Survey-36, and Temporal Satisfaction with Life Scale were used as well as some open-ended questions. Using descriptive analysis and correlations, results showed that caregiving burden of the participants was correlated to quality of life and life satisfaction during the COVID-19 (p < 0.05). Specific types of burden include: stress, isolation, financial issues, disruption of therapy, patient-caregiver relationship, and kinship relations. These findings provide important information about the increased burden of caregivers during the pandemic. This study offers information to design a framework of interventions to reduce the physical, social, and psychological effects on caregivers in similar conditions.

Health Profiles among Community-Dwelling Older Adults with Cognitive Impairment and Their Implications for Caregiving Experience.

INTRODUCTION: Identifying health conditions of persons with cognitive impairment (PCI) in the community and exploring their implications for caregiving experience are vital for effective allocation of healthcare resources. This study examined distinct PCI health profiles among community-dwelling PCI and their association with caregiving burden and benefits. METHODS: Latent profile analysis and multivariable regression were applied to dyadic data from 266 PCI and their caregivers in Singapore. RESULTS: Three PCI health profiles were identified: less impaired (40% of PCI), moderately impaired (30%), and severely impaired (30%). Caregivers for severely impaired PCI were more likely to report a higher level of caregiving burden, and caregivers for moderately impaired PCI were more likely to report a higher level of caregiving benefits, compared to caregivers for less impaired PCI. CONCLUSION: The findings captured heterogeneity in health status among PCI in the community. Tailored interventions, based on PCI health profiles, should be designed to reduce caregiving burden and increase caregiving benefits.

Prevalence and predictors of depressive symptoms among caregivers of patients with epilepsy in Hong Kong.

STUDY AIM: To estimate the prevalence of high caregiving burden and depressive symptoms among caregivers (CG) of patients with epilepsy (PWEs) in Hong Kong and identify risk and protective factors for both outcomes after the Model of Stress and Carer Burden (MSCB). METHODS: This cross-sectional study recruited participants from local epilepsy clinics to complete a 15-minute survey on a tablet. Caregiving burden (CB) was assessed using the 4-item Zarit Caregiver Burden Interview. Depressive symptoms were assessed using the 2-item Patient Health Questionnaire. Family functioning was assessed using the Short-Form Family Assessment Device General Functioning Subscale. Sociodemographic data of the caregivers and clinical data of the PWE they cared for were described. Hierarchical logistic regression models were used to analyze the factors associated with the outcomes. RESULTS: A hundred and fifty-one CGs of PWEs were recruited for this study. The prevalence of high caregiving burden (ZBI-4 > 7) for CGs of PWEs was 58.9% (n = 89), whereas the prevalence of high depressive symptoms (PHQ2 > 2) was 23.8% (n = 36). Hierarchical logistic regression analysis revealed that entering patient characteristics and care situations did not enhance the model's predictability. In the full model, a high perceived CB was a risk factor for elevated depressive symptoms. Good physical health protects against depressive symptoms. CONCLUSIONS: Among caregivers of PWE in Hong Kong, a high perceived caregiving burden was a risk factor for elevated depressive symptoms; however, the clinical characteristics of the PWEs were not. Self-reported physical health is a protective factor against increased depressive symptoms.

Association of dementia comorbidities with caregivers' physical, psychological, social, and financial burden.

BACKGROUND: Informal caregivers of older adults with dementia may experience substantial burdens during their caregiving process, especially when caring for older adults with other comorbid conditions. This study evaluated whether and how comorbidity burden for persons with dementia (PWD) was associated with caregivers' physical, psychological, social, and financial burden as well as caregiving gain. METHODS: Data were from 1,065 community-dwelling older adults living with dementia and their primary caregivers in the National Health and Aging Trends Study and the National Study of Caregiving. PWD's comorbidity burden was measured by the count of chronic conditions and the pattern of comorbidity identified by the latent class analysis (LCA). We considered four domains of caregiving burden-physical, psychological, social, and financial burden. We used linear regressions to identify the unadjusted and adjusted associations between PWD's comorbidity burden and caregiving burden and gain. RESULTS: Of 1,065 PWD, 13.5% had 0-1 and 24.9% had 5 or more number of comorbid chronic conditions, respectively. After multivariable adjustment, an additional chronic condition is associated with an 0.11- and 0.36-point increase in caregivers' physical and psychological burden, respectively. Caregivers of PWD with 5 or more chronic conditions had a 0.64- and 2.22-point higher score of physical and psychological burden, respectively, than those caring for PWD with 0 or 1 comorbid condition. LCA divided PWD into two classes, a high comorbidity class (69.0%) and a low comorbidity class (31.0%). Caregivers of PWD in the high comorbidity burden class had a 0.46-point higher score of physical caregiving burden than those in the low comorbidity burden class. No significant association was found between care recipients' comorbidity burden and their caregivers' social and financial burden or caregiving gain. CONCLUSIONS: The comorbidity burden of PWD was associated with their caregivers' physical and psychological caregiving burden. Relevant interventions to manage the comorbid conditions of people living with dementia and support their caregivers are crucial to improving their physical health and psychological wellbeing.

Informal caregivers' negative affect: The interplay of caregivers' resilience, aging anxiety and burden.

OBJECTIVES: This study focused on the negative affect of informal caregivers of older adults. In a novel investigation, the interplay of aging anxiety, caregiving burden, and resilience as a protective factor was examined, suggesting that aging anxiety and caregiving burden are mediators for the link between resilience and negative affect. METHODS: In a cross-sectional design, 191 Israeli informal caregivers of older adults (65+) participated in the study. They completed questionnaires that assessed demographic and caregiving characteristics, resilience, aging anxiety, caregiving burden, and negative affect. RESULTS: The findings showed a serial mediation process in which higher resilience predicted lower caregiving burden, which subsequently predicted lower aging anxiety, which subsequently predicted lower negative affect. However, the indirect path from resilience to aging anxiety and negative affect was non-significant. CONCLUSION: Based on this study's findings, the aging anxiety of informal caregivers of older adults should be professionally addressed in the early stages of caregiving because it contributes to the caregiving burden and negative affect. Additionally, resilience should be enhanced by psycho-social interventions tailored to address informal caregiver challenges that often induce caregiving burden and negative affect.

Caregiving burden and positive aspects of caregiving in schizophrenia: Mediating roles of hope and social support.

Caring for an ill relative with schizophrenia can lead to both negative and positive experiences. The study aimed to determine the relationship between caregiving burden and positive caregiving experiences and evaluate the roles of hope and social support as possible mediators in this relationship. This study included 344 Chinese family caregivers of adults with schizophrenia. Instruments included Positive Aspects of Caregiving, Herth Hope Index, Caregiver Burden Inventory, and Multidimensional Scale of Perceived Social Support. Data was analysed by Mann-Whitney U tests, Kruskal-Wallis H tests, Spearman correlation, and a serial mediation model. Results showed that hope and social support separately and serially mediated the relationship between caregiving burden and positive caregiving experiences. The mediation effect of hope was stronger than that of social support and their serial mediation effect. Increasing hope and social support of family caregivers may alleviate caregiving burden and improve positive caregiving experiences.

Emotion dysregulation and family functioning moderate family caregiving burden during the pandemic.

OBJECTIVES: Since the onset of COVID-19 pandemic, additional risk factors affecting family caregivers' mental health have arisen. Therefore, personal stress coping strategies and family dynamics became important factors in reducing the impact of the pandemic on family caregivers' mental health. The present research aimed to estimate the association between COVID-19 stressors and family caregiving burden. Moreover, moderating effects of emotion dysregulation and family functioning on this association were investigated. METHODS: This study analyzed data collected in April 2021 from 154 family caregivers (Mage = 38.79, SDage = 9.36, range = 22-64) recruited through Amazon's Mechanical Turk (MTurk). The impact of COVID-19 stressors on family caregiving burden was tested, and moderating impacts of emotion dysregulation and family functioning were also investigated. RESULTS: Both COVID-19 stress exposure and stress appraisal were positively associated with family caregiving burden. Emotion dysregulation and problematic family functioning were also positively associated with family caregiving burden. A significant moderating effect of emotion dysregulation was found, such that family caregivers with higher emotion dysregulation were likely to feel more caregiving burden when they experienced more COVID-19 stressors. SIGNIFICANCE OF RESULTS: The current research highlighted the role of emotion regulation in reducing the negative impact of COVID-19 stressors on family caregiving burden. The research also emphasizes the need for intervention programs to improve emotion regulation strategies to decrease family caregiving burden during the pandemic.

Correlation between Quality of Life and Burden in Caregivers of Advanced Stage Cancer Patients on Best Supportive Care.

Objectives: Patients with advanced cancer with incurable diseases are generally cared for by their families in India. There is a lack of data on the perceived caregiver burden, quality of life (QOL) of patients and caregivers in India, especially among cancer patients not on any oncologic management. Material and Methods: We conducted a cross-sectional study among 220 patients of advanced cancer on best supportive care and their respective 220 family caregivers. Our primary objective was to identify a correlation between caregiver burden and QOL. After taking informed consent from both patients and caregivers, we assessed the QOL of the patient using the European Organization for the Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire Core 15 Palliative Care (QLQ C15PAL) questionnaire from the patient, assessing the Caregiver Burden using Zarit Burden Interview, assessing the QOL of the caregiver using the WHO QOL BREF Questionnaire, in a single session during their routine follow-up in the Palliative Care Clinic of our institution. Results: We noticed a statistically significant negative (Spearman) correlation between the Caregiver Burden as assessed by Zarit Burden Interview (ZBI) and the psychological (r = -0.302, P < 0.01), social (r= -0.498, P < 0.01) and environmental (r = -0.396, P < 0.01) domains of the WHO QOL BREF Questionnaire. Caregiving Burden as assessed ZBI total score was noted to have a statistically significant negative correlation with physical functioning (r = -0.37, P < 0.01), emotional functioning (r = -0.435, P < 0.01) and global QOL scores (r = -0.499, P < 0.01) assessed from the patient using the EORTC QLQ C15 PAL questionnaire. It also had a statistically significant small positive correlation with EORTC QLQ C15 PAL symptom scores, such as dyspnoea, insomnia, constipation, nausea, fatigue and pain. The median caregiver burden score was 39, showing higher burden as compared to previous studies. Caregivers who were spouses of the patient, illiterate, homemakers, with low-income families reported higher burden. Conclusion: A high perceived caregiving burden is associated with impaired QOL in family caregivers of advanced cancer patients on best supportive care. Multiple patient related factors and demographic factors tend to affect burden of the caregiver.

Comparing adult-child and spousal caregiver burden and potential contributors.

BACKGROUND: Adult-children caring for a parent with cancer comprise a significant segment of caregivers. Yet less is known about adult-child caregivers, their burden, or caregivers' and patients' gender's impact, which may differ from the well-studied spousal caregiver. This knowledge gap may hinder efforts to ameliorate adult-children's caregiver burden. METHODS: We analyzed caregiver surveys from the Cancer Care Outcomes Research and Surveillance Consortium, a multi-regional population-based study of patients with colorectal or lung cancer. Using t tests and multivariate regression models, we assessed whether adult-child and spousal caregivers' caregiving responsibilities and social/emotional and financial burdens differed and used structural equation models (SEMs) to examine mediating factors. RESULTS: Compared with spouses/partners (N = 1007), adult-children (N = 227) spent less time caregiving (14 vs 23 hours/week; P < .001), but experienced higher social/ emotional burden (P < .01). In models adjusted for objective caregiving burden measures and demographics, adult-children's social/emotional (P < .05) and financial burdens (P < .01) were greater than spouses'. Poor communication quality was associated with greater social/emotional burden for both groups (P < .05). SEMs indicated that gender concordance between caregivers and patients (eg, daughters caring for mothers) and caregiver employment increased the difference between adult-child and spouses' social/emotional burden, whereas caregiver-patient relationship quality reduced it. CONCLUSIONS: Adult-children spend less time caregiving than spouses/partners, but have higher social/emotional and financial caregiving burdens, partially due to adult-children's employment, caregiver-patients' gender concordance, and relationship quality. Gender concordance's contribution to greater social/emotional burden adds important context to prior findings, indicating female caregivers experience the most burden. Interventions that improve caregiver-patient communication may reduce both adult-child and spousal caregiver burden.

Racial and ethnic disparities in cancer caregiver burden and potential sociocultural mediators.

PURPOSE: Black and Hispanic cancer patients experience many worse care quality and health outcomes than non-Hispanic White patients, yet less is known about disparities in caregiving responsibilities and burden among cancer caregivers. METHODS: We analyzed cross-sectional data from Cancer Care Outcomes Research and Surveillance consortium, a large multi-regional, population-based study of colorectal and lung cancer patients and their caregivers. Bivariate and multivariable regression models assessed differences by racial and ethnic groups in caregiving responsibilities and social/emotional, financial, and health burdens. Structural equation models estimated whether sociocultural resources (social support, caregiving preparedness, caregiver-patient communication) mediated racial and ethnic differences in caregiver burden. RESULTS: Compared with non-Hispanic White caregivers (N = 1,169), Black (N = 220) and Hispanic (N = 84) caregivers spent more time caregiving (18 vs. 26 vs. 26 h/week; P < 0.001), completed more tasks (6.8 vs. 7.6 vs. 8.7; P < 0.05), and reported greater financial burden (P = 0.02). Yet, compared to non-Hispanic Whites, Hispanic caregivers reported similar social/emotional and health burdens, while Black caregivers reported lower levels (P < 0.01). In adjusted models, disparities in financial burden disappeared, and Hispanic caregivers had less health burden than non-Hispanic White caregivers (P = 0.01). Social support and/or caregiving preparedness partially mediated the Black-White gap for all three types of burdens. CONCLUSIONS: Black and Hispanic cancer caregivers perform more caregiving and report greater financial burden than non-Hispanic White caregivers, but experience lower or equivalent social/emotional and health burdens. Racial differences in caregivers' social support and caregiving preparedness levels partially explain Black-White burden differences. Research and policy should address Black and Hispanic caregivers' increased financial burden.

The needs and well-being of severe asthma and COPD carers: A cross-sectional study.

BACKGROUND AND OBJECTIVE: Caring for people with severe asthma and chronic obstructive pulmonary disease (COPD) can impair the quality of life (QoL) of the carer. We aimed to describe the QoL and needs of severe asthma and COPD carers. METHODS: Carers of severe asthma (n = 89) and COPD (n = 48) completed an online cross-sectional survey assessing QoL and carer support needs using the Short Form Health Survey 12v2 (SF-12), the Hospital Anxiety and Depression Scale (HADS) and Carers Support Needs Assessment Tool (CSNAT) questionnaires. RESULTS: Carers of people with severe asthma and COPD were similar in age (mean ± SD 57.78 ± 14.09 vs. 56.93 ± 12.91) and gender (65% female vs. 66%); however, they differed in caring duration (proportion caring for >10 years: 65% vs. 33%, p < 0.002). QoL was impaired in both groups, but there were no significant differences between severe asthma and COPD carers in either of the SF-12 component scores. The HADS scores revealed no difference between groups. Compared to severe asthma carers, COPD carers had significantly greater needs for: 'having time for self' (33% vs. 13%, p = 0.006), 'equipment to help care for relative' (33% vs. 13%, p = 0.006), 'practical help in the home' (35% vs. 18%, p = 0.006) and 'getting a break from caring overnight' (21% vs. 6%, p = 0.023). CONCLUSION: QoL is impaired in carers of people with severe asthma to a similar degree of COPD carers and other debilitating diseases like cancer. These novel data highlight the support needs of severe asthma carers and identifies areas where tailored support is needed to reduce their substantial carer burden.