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This article contains a review of literature published from 2010 to 2016 on family caregiving in oncology. An analysis of 810 citations resulted in 50 randomized trials. These trials describe the need to prepare family caregivers for the complex role they play in cancer care. Several studies have demonstrated improved quality of life for family caregivers and improved emotional support from interventions. Several studies addressed communication and relational intimacy, which are key concerns. An additional focus of these trials was in the area of caregiving tasks and ways to diminish the burden of caregiving and preparedness for this role. Further research is needed in this area given the shift to outpatient care and as family caregivers become the primary providers of care. Future research should include expanding tested models of family caregiver support in clinical practice and in diverse populations.

Background: Several empirical studies have shown an association between informal caregiving for adults and loneliness or social isolation. Nevertheless, a systematic review is lacking synthesizing studies which have investigated these aforementioned associations. Therefore, our purpose was to give an overview of the existing evidence from observational studies. Materials and Methods: Three electronic databases (Medline, PsycINFO, CINAHL) were searched in June 2021. Observational studies investigating the association between informal caregiving for adults and loneliness or social isolation were included. In contrast, studies examining grandchild care or private care for chronically ill children were excluded. Data extractions covered study design, assessment of informal caregiving, loneliness and social isolation, the characteristics of the sample, the analytical approach and key findings. Study quality was assessed based on the NIH Quality Assessment Tool for Observational Cohort and Cross-Sectional Studies. Each step (study selection, data extraction and evaluation of study quality) was conducted by two reviewers. Results: In sum, twelve studies were included in our review (seven cross-sectional studies and five longitudinal studies)—all included studies were either from North America or Europe. The studies mainly showed an association between providing informal care and higher loneliness levels. The overall study quality was fair to good. Conclusion: Our systematic review mainly identified associations between providing informal care and higher loneliness levels. This is of great importance in assisting informal caregivers in avoiding loneliness, since it is associated with subsequent morbidity and mortality. Moreover, high loneliness levels of informal caregivers may have adverse consequences for informal care recipients.

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.

ABSTRACTObjectiveThis study examines whether transition to caregiving within or outside the household is associated with changes in suicidal ideation and whether this depends on the type of caregiver relationship, the age or gender of the caregiver, or the welfare system. DesignLongitudinal study. SettingTen European countries. ParticipantsData from the Survey of Health, Ageing, and Retirement in Europe were used (waves 1, 2, 4, 5, and 6) including participants aged ≥40 years (pooled Observations = 171,848). MeasurementsSuicidal ideation was measured using the Euro-D scale. Caregiving was measured as care inside and outside the household, and for different recipients. Fixed effects logistic regression analyses, adjusted for health and sociodemographic factors, were used. ResultsTransitioning into caregiving inside the household was associated with higher odds of suicidal ideation, in particular if they transitioned into care for partners or parents and within Southern and Bismarckian welfare systems. Transitioning into caregiving outside the household was not associated with suicidal ideation, except among those transitioning into caregiving for non-relatives (higher odds of suicidal ideation), and among male and older caregivers (lower odds of suicidal ideation). Suicide ideation was higher among caregivers in Southern compared to Bismarckian or Scandinavian welfare systems. ConclusionInformal caregiving is associated with suicidal ideation among caregivers inside but not among all caregivers outside the household. The caregiver’s characteristics, the care relationship, and the welfare system play an important role. Preventing suicidal ideation requires interventions that focus on informal caregivers and consider their individual and contextual factors.

Aims: Motivated by ageing populations, healthcare policies increasingly emphasize the role of informal care. This study examines how prevalence rates of informal caregivers and intensive caregivers (i.e. those who provide informal care for at least 11 hours a week) vary between European countries, and to what extent informal caregiving and intensive caregiving relate to countries’ formal long-term care provisions and family care norms. Methods: Multilevel logistic regression analyses on data from the European Social Survey Round 7 (n = 32,894 respondents in n = 19 countries) were used to test (a) contradicting hypotheses regarding the role of formal long-term care provisions based on crowding-out, crowding-in and specialization arguments and (b) the hypothesis that strong family care norms are positively related to (intensive) informal caregiving. Results: Prevalence rates of informal caregiving varied between European countries, from 20% to 44%. Intensive caregiving ranged from 4% to 11%. Opposite patterns regarding the role of formal long-term care provisions were revealed: generous long-term care provisions in a country were related to a higher likelihood of providing informal care, but a lower likelihood of providing intensive care. Moreover, intensive caregiving was more likely when family care norms in a country were strong. Conclusions: This study provided support for the specialization argument by showing that generous formal long-term care provisions crowded-out intensive caregiving, but also encouraged more people to provide (some) informal care. Because especially intensive caregiving is burdensome, low levels of formal long-term care provisions might bring risks to caregivers’ well-being and healthcare systems’ sustainability.

Multigenerational caregiving is important because it affects social and economic outcomes. Existing studies usually exclude theoretically and empirically important aspects—emotional care and horizontal care—that may systematically underestimate gender differences. In this study, we comprehensively describe caregiving by gender and age and examine how sensitive estimates are to the inclusion of directions and types of care. Using the Generations and Gender Survey (GGS) in Europe (N = 114,147), we find that women are more likely to provide care than men across the life course, and gender gaps are largest during critical periods for human capital accumulation. Significant gender gaps in favor of more women providing care are found in most countries, especially when emotional caregiving is included, but in some countries, more men provide care at the oldest ages. These findings highlight how measuring caregiving well is critical to understanding the gendered life course.

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.

This study investigates indicators of disorganized caregiving among caregivers of children who have a familial predisposition of schizophrenia spectrum psychosis (SZ) or bipolar disorder (BP), and whether indicators of disorganized caregiving are associated with the caregivers’ and children’s level of functioning as well as the children’s internalizing and externalizing behavior problems. Indicators of disorganized caregiving were assessed with the Caregiving Helplessness Questionnaire (CHQ). Level of functioning was evaluated using the Children’s Global Assessment Scale and the Personal and Social Performance Scale, while dimensional psychopathology were measured with the Child Behavior Checklist. 185 caregivers belonging to a SZ combined group (i.e., SZ-I + SZ co-caregiver), 110 caregivers to a BP combined group (i.e., BP-I + BP co-caregiver), and 184 caregivers to a population-based control group provided data on CHQ. Having a history of SZ or BP or being a co-caregiver to a parent with SZ or BP was associated with higher levels of experiences of helplessness and fear. Higher scores on helplessness were associated with lower level of functioning among caregivers and children and with children having externalizing/internalizing behavior problems. These results emphasize the need for interventions addressing indicators of disorganized caregiving in families with SZ or BP.

The aging population and overstretched healthcare systems are increasing demand for home nursing by informal caregivers, significantly affecting their mental health. This study aimed to examine the level of population’s engagement in caregiving and the association between high-intensity caregiving and perceived caregiving stress in the general population of Lithuania. A nationally representative sample (N = 1000) of Lithuanian residents aged 18 years and older (mean age 53.1 ± 17.9 years) was interviewed in their households. The results showed that 17.4% (95% CI: 15.1, 19.8) of respondents were involved in home nursing activities to some extent, with 42% of these being high-intensity caregivers (providing 11 or more hours of home care per week). Caregivers were statistically significantly more likely to be female and have higher education levels. Perceived stress was significantly associated with higher education levels (OR = 2.66, 95% CI: 1.41, 5.02), high-intensity caregiving (OR = 2.14, 95% CI: 1.15, 3.97), regular involvement in home nursing (OR = 1.86, 95% CI: 1.01, 3.43), and caring for recipients with dementia or individuals entirely dependent on assistance (OR = 2.52, 95% CI: 1.22, 5.23). Caregivers perceived stress is associated with their level of education, the intensity and regularity of home nursing, as well as the level of dependency of the care recipient, especially in cases of dementia. Comprehensive long-term care policies should be developed to ensure the larger availability of formal care resources, increased societal participation in home nursing, and tailored interventions for high intensity caregivers.

ObjectiveResilience has been proposed as a primary factor in how many family caregivers of patients with advanced cancer are able to resist psychological strain and perform effectively in the role while bearing a high load of caregiving tasks. To evaluate this hypothesis, we examined whether self-perceived resilience is associated with distress (anxiety and depressive symptoms), caregiver preparedness, and readiness for surrogate decision-making among a racially diverse sample of family caregivers of patients with newly diagnosed advanced cancer.MethodsSecondary analysis of baseline data from two small-scale, pilot clinical trials that both recruited family caregivers of patients with newly diagnosed advanced cancer. Using multivariable linear regression, we analyzed relationships of resilience as a predictor of mood, caregiving preparedness, and readiness for surrogate decision-making, controlling for sociodemographics.ResultsCaregiver participants (N = 112) were mean 56 years of age and mostly female (76%), the patient’s spouse/partner (52%), and White (56%) or African-American/Black (43%). After controlling for demographics, standardized results indicated that higher resilience was relevantly associated with higher caregiver preparedness (beta = .46, p < .001), higher readiness for surrogate decision-making (beta = .20, p < .05) and lower anxiety (beta =  − .19, p < .05), and depressive symptoms (beta =  − .20, p < .05).ConclusionsThese results suggest that resilience may be critical to caregivers’ abilities to manage stress, be effective sources of support to patients, and feel ready to make future medical decisions on behalf of patients. Future work should explore and clinicians should consider whether resilience can be enhanced in cancer caregivers to optimize their well-being and ability to perform in the caregiving and surrogate decision-making roles.