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The objective of this study is to describe the caregiver burden, as well as the financial burden among caregivers after inpatient and outpatient neurosurgical patients. In this single center, observational study, adult patients undergoing elective inpatient or outpatient neurosurgery (supratentorial tumor resection or lumbar microdiscectomy) and his/her caregiver were recruited for the study. Bakas Caregiving Outcome Scale (BCOS) was used to assess caregiver burden and data was collected from preoperative period until post-operative day (POD) 30. Cost burden was assessed by a cost diary from day of surgery till POD 7. Forty-eight patient-caregiver pairs (21 inpatient craniotomies, 7 outpatient craniotomies, and 20 outpatient microdiscectomies) completed the study. BCOS values were in the negative impact range (<60) on POD1 in craniotomy group and improved to positive impact range (>60) after POD3. Median BCOS score remained at 60 in outpatient microdiscectomy. 56% of caregiver had at least 1 day of loss of income and 20% lost income throughout first 8 days. Median Cost (in Canadian dollars) associated with caregiving ranged from C$57 to C$250 amongst different groups. We concluded that caring for patients after craniotomy is psychologically demanding which leads to an increase in caregiver burden. In addition, there is a cost burden for the care givers in the form of missed workdays and additional direct expenses. Further studies are needed to recognize this problem and address the burden among the caregivers in the neurosurgical population., Competing Interests: Declaration of Competing Interest The authors have no conflict of interest to disclose., (Copyright © 2021 Elsevier Ltd. All rights reserved.)

Purpose: Cancer caregivers experience health challenges related to their caregiving role, and self-efficacy can contribute to health outcomes through behavioral, environmental, and personal factors. The purpose of this integrative review was to examine self-efficacy in caregivers of adults diagnosed with cancer, including its association with health factors., Method: A systematic search of PubMed, CINAHL, and PsychInfo yielded 560 articles. Following duplicate removal, 232 articles were screened for inclusion criteria with 71 articles remaining for final review., Results: Studies were generally quantitative (n = 67), with predominantly female (n = 55), White (n = 36) caregivers, between the ages of 45-60 (n = 48). Self-efficacy was significantly associated with quality of life, caregiver function, social support, hope, depression, anxiety, and burden as a predictor, mediator, and outcome. Physical health and social determinants of health (social support and financial well-being) were addressed among fewer studies than mental and emotional health outcomes., Conclusions: Addressing self-efficacy in diverse populations and within physical, mental, and social health contexts will enhance understanding of how self-efficacy impacts caregivers of adults diagnosed with cancer. Nurses and other health care professionals can then effectively address supportive needs of caregivers in the personal, behavioral, and environmental domains., (Copyright © 2021 Elsevier Ltd. All rights reserved.)

Aims: The purpose of this study was to retrospectively investigate care difficulties experienced by caregivers of people with schizophrenia during COVID-19 pandemic lockdowns in Japan (April 7-May 25, 2020) and examine associations between these care difficulties during lockdowns and daily caregiver burden., Methods: Data were collected from 132 participants of the LINE Schizophrenia Family Association using an online survey., Results: Caregivers were mostly concerned about who would care for people with schizophrenia if caregivers become infected with COVID-19. A significant association was found between higher daily caregiver burden and more difficult care experiences during COVID-19 pandemic lockdowns (B = 0.58, 95% confidence interval, 0.40-0.75, P < .01, adjusted R-squared = .34)., Conclusions: Further studies and supports for caregivers of people with schizophrenia are needed., (© 2021 The Authors. Neuropsychopharmacology Reports published by John Wiley & Sons Australia, Ltd on behalf of the Japanese Society of Neuropsychopharmacology.)

The recognition of anxiety as one of the most commonly co-occurring diagnoses for individuals on the autism spectrum has led to increased research on symptomatology and treatment, but there is limited research documenting the impact of this anxiety. To address this, this study reports on the Child Anxiety Life Interference Scale (CALIS, parent version) in a community sample of 121 parents of children on the autism spectrum. Scores indicate that the anxiety is impacting upon the child's engagement in activities both in and outside of home as well as impacting upon parent life. Explanatory variables differed for CALIS subscales. As the child's difficulties with uncertainty and parent level of anxiety were the variables that explained the most variance, these may be important foci for effective interventions.

Background: Caring for children with cerebral palsy (CP) for many aspects of their lives may affect caregiver's psychological health. Emergence of COVID-19 put added pressure on caregivers., Aims: The aim of this study was to investigate the psychological health of Iranian caregivers of children with CP and associated risks during a lockdown period., Methods: Using online snowball sampling, 160 caregivers of children with CP participated in this web-based cross-sectional study. The Hospital Anxiety and Depression Scale (HADS), Perceived Stress Scale (PSS-4), Caregiver Difficulties Scale (CDS), and a demographic questionnaire were administered. Hierarchical multiple linear regression analysis was applied to identify risk factors related to caregiver psychological health., Outcomes and Results: Mental health problems were prevalent; (depression = 45.0% and anxiety = 40.6%). Significant correlations were found between CDS and HADS-Anxiety (r = 0.472, P < 0.001), HADS-depression (r = 0.513, P < 0.001), and perceived stress (PSS) related to COVID-19 (r = 0.425, P < 0.001). After controlling for demographic and clinical variables, burden (CDS) was found to significantly predict caregiver anxiety, depression and stress. Furthermore, several demographic characteristics (being married, low educational level and low income) were significantly related to high HADS Anxiety scores. For depression, only having a physical problem was significantly related to HADS among demographic variables. No significant correlations were found between PSS-4 and demographic variables., Conclusions and Implications: During COVID-19 outbreak, the mental health of caregivers of children with CP is affected by multiple factors such as burden of care and demographic characteristics. Due to the importance of well-being among caregivers of disabled children, a comprehensive plan including psychological consultation, remote education, or in-person handouts for the self-care or handling of the children and adequate distance support may enable better mental health for these caregivers., (Copyright © 2021 Elsevier Ltd. All rights reserved.)

Objectives: The family caregivers of patients undergoing coronary artery bypass graft (CABG) surgery experience considerable physical and emotional distress. This study aimed to investigate the effect of an educational support programme on caregiver burden among the family caregivers of patients undergoing CABG surgery in Iran., Methods: This non-randomised controlled clinical trial was conducted from January to April 2017 at a cardiovascular centre in Tehran, Iran. A total of 80 family caregivers of patients undergoing CABG surgery were sequentially selected and non-randomly assigned to intervention and control groups. The control group received routine care, whereas the intervention group received additional education sessions at baseline, prior to surgery, the day after surgery and before discharge. Caregiver burden was compared at baseline and six weeks post-discharge using the Persian-language versions of the Caregiver Burden Inventory (CBI) and Katz Index of Independence in Activities of Daily Living (IADL)., Results: A significant difference was observed between family caregivers in the control and intervention groups with regards to pre-post differences in mean CBI scores (+1.67 ± 19.23 versus +17.45 ± 9.83; P <0.001), with an effect size of -1.14. In addition, there was a significant increase in mean post-discharge IADL scores among CABG patients in the intervention group compared to the control group (4.42 ± 1.05 versus 3.07 ± 1.09; P <0.001)., Conclusion: An educational support programme significantly reduced caregiver burden among the family members of patients undergoing CABG surgery in Iran. As such, in addition to routine care, healthcare providers should provide educational support to this population to help mitigate caregiver burden., Competing Interests: CONFLICT OF INTEREST The authors declare no conflicts of interest., (© Copyright 2021, Sultan Qaboos University Medical Journal, All Rights Reserved.)

Background/objectives: As home becomes the most common place of death in the United States, information about caregiver support and place of death is critical to improve patient and caregiver experiences at end of life. We seek to examine (1) the association between family care availability and place of death; and (2) caregiving intensity associated with place of death., Design: 2017 National Health and Aging Trends Study and National Study of Caregiving; nationally representative cross-sectional study of deceased older adults and last-month-of-life (LML) caregivers., Setting: United States; all places of deaths., Participants: Three-hundred and seventy-five decedents and 267 LML caregivers., Measurements: Place of death (home, hospital, and nursing or hospice facility), family care availability (spouse/partner, household size, number of daughters and sons), caregiving intensity (hours of help provided at LML and a binary indicator for high care-related emotional difficulty)., Results: 38.9% of older adults died at home, followed by hospital (33.1%), and nursing or hospice facility (28.0%). In an adjusted multinomial logistic regression, decedents with larger household size (odds ratio [OR]: 0.441; 95% confidence interval [CI]: 0.269-0.724) and more daughters (OR: 0.743 [95% CI: 0.575-0.958]) had lower odds of dying in nursing or hospice facility relative to dying at home. For older adults who died at home, caregivers provided 209.8 h of help at LML. In contrast, when death occurred in nursing or hospice facility, caregivers provided 91.6 fewer hours of help, adjusted for decedent and caregiver characteristics. Dying in hospital was associated with higher odds of caregiver emotional difficulty relative to home deaths (OR: 4.093 [95% CI: 1.623-10.323])., Conclusions: Household size and number of daughters are important determinants of place of death. Despite dying at home being associated with more hours of direct caregiving; caregiver emotional strain was experienced as higher for hospital deaths. Better support services for end-of-life caregivers might improve patient and caregiver experiences for home and hospital deaths., (© 2021 The American Geriatrics Society.)

Purpose: The study aimed to determine the caregiver burden and coping strategies in caregivers of familial Mediterranean fever (FMF) patients in relation to illness severity, therapy and health-related quality of life (HRQoL)., Methods: The study included 171 paediatric FMF patients and their caregivers (parents). The caregivers were asked to complete a socio-demographic form, the Zarit caregiver burden interview (ZCBI) and the Brief COPE. The patients and their caregivers were asked to complete the KINDer Lebensqualitätsfragebogen questionnaire (self-report and proxy report, respectively) for assessing HRQoL. The patients were categorised according to their disease activity (mild, moderate or severe) and the presence or absence of anti-IL-1 therapy., Results: The mean ZCBI score of the caregivers was 44.7 ± 13.5. ZCBI and COPE scores did not differ significantly between the caregivers of FMF patients receiving and not receiving anti-IL-1 therapy. However, dysfunctional COPE (p = 0.039) and ZCBI (p = 0.021) scores showed a significant difference between the caregivers in relation to patient's disease severity. ZCBI scores were positively correlated with dysfunctional coping (p = 0.01). Self-reported HRQoL disease module scores were lower for the patients who received anti-IL-1 therapy than for those did not (p = 0.009). Proxy-reported (p < 0.001) and self-reported (p = 0.043) HRQoL disease module scores were lower for the patients with severe disease activity., Conclusions: As the caregiver burden increases, parents tend to use a dysfunctional coping strategy. Good control of disease activity with administration of medical therapy can reduce the disease severity, thereby decrease the caregiver burden, and secondly help to reduce the usage of dysfunctional coping in caregivers.

Background: Spouses of cancer survivors are at an increased risk of poor mental health outcomes but are known to underuse supportive services. The objective of the current study was to determine how the health and health care use of cancer survivors were associated with depression and anxiety-related health care use in their spouses., Methods: The current observational study used data from the Medical Expenditure Panel Survey to identify married individuals with a cancer-related medical event or disability ("cancer survivors"), and linked health and health care use data across spousal dyads. Spouses reporting a prescription for an antidepressant or antianxiety medication or any psychotherapy were flagged as having used mental health care. Correlates of use were assessed, with a focus on the health and health care use of the cancer survivor., Results: Greater than 25% of the spouses of cancer survivors used mental health care over the approximately 2.5 years of follow-up. Controlling for their own predisposing, enabling, and need characteristics, spouses were found to be less likely to use mental health care if the cancer survivor reported more health conditions or elevated depressed mood compared with dyads in which the survivor reported low distress and depression. Spouses were nearly 3 times more likely to use mental health care if the cancer survivor themselves had used mental health care (odds ratio, 2.98; 95% confidence interval, 2.17-4.09)., Conclusions: The findings of the current study enhance understanding of how health outcomes are intertwined in families with cancer, and reinforce the importance of a family-centered approach to cancer care that facilitates psychosocial care., Lay Summary: The health and well-being of cancer survivors and their spouses are intertwined. The results of the current study demonstrated that this interrelationship extends to mental health care related to depression and anxiety. Spouses of cancer survivors were found to be less likely to receive mental health care when the survivor had more health care needs. Spouses were nearly 3 times more likely to receive care if the survivor also was receiving mental health care. Caregiving spouses may face more challenges finding the time, money, or energy to engage in their own self-care. However, providing supportive care to one partner may help the other partner access care as well., (© 2020 American Cancer Society.)

Objectives　Research suggests that Japan has a substantial number of young carers, that is, children who provide care to their family members. However, little is known about the effects of their caring roles on their life satisfaction and health status. Therefore, the objective of the present study was to investigate the relationship between caring roles, life satisfaction, and subjective health status among high school students, as well as to discuss the effects of caring roles on young carers' life satisfaction and subjective health status.Methods　We conducted a questionnaire survey on 6,160 high school students from 10 prefectural schools in Osaka prefecture, Japan. The questionnaire included questions relating to family members and students' caring roles, with one question regarding life satisfaction, one question regarding self-rated health status, and seven questions regarding subjective health symptoms. Principal component analysis was applied to responses to the seven questions regarding subjective health symptoms. Then, the relationship between caring roles, life satisfaction, and subjective health status was analyzed, with adjustment for potential confounding factors.Results　A total of 5,246 valid questionnaires were collected; however, our analysis was limited to 4,509 valid questionnaires that included all the required information. It was found that 47 (1.0%) students provided care for infant siblings without disability, illness, or other special needs (Young Carers A), and 233 (5.2%) provided care for family members with disabilities, illnesses, or other special needs (Young Carers B). The remaining 4,229 (93.8%) students (those who did not provide care to their family members) formed the control group. Logistic regression analysis indicated a significant relationship between caring roles and life satisfaction (P<0.001). The odds ratios for dissatisfaction among Young Carers A and B were 2.742 and 1.546, respectively, which were statistically significant (P<0.001 and P=0.003, respectively). Although no significant relationship was found between self-rated health status and caring roles (P=0.109), the principal component score for subjective health symptoms in multiple regression analysis revealed a significant relationship with caring roles (P<0.001). Compared with the control group, the partial regression coefficients among Young Carers A and B were 0.362 and 0.330, respectively, which were also statistically significant (P=0.012 and P<0.001, respectively).Conclusion　Our results suggest that excessive caring burden may have adverse effects on young carers' life satisfaction and subjective health status.

Objectives: Prader-Willi syndrome (PWS) is a rare genetic disorder characterized by maladaptive behaviors, amongst which hyperphagia is a life-long concern for individuals with PWS and their caregivers. The current study examined the contribution of hyperphagia and other factors to caregiver burden across lifespan, in 204 caregivers of individuals with PWS living in the US, using the Zarit Burden Interview (ZBI) and the hyperphagia questionnaire (HQ-CT)., Results: We found a strong relationship between ZBI and HQ-CT especially in individuals with PWS older than 4 y and showed that HQ-CT scores of individuals with PWS is positively correlated with ZBI scores of their caregivers. The weight status of individuals with PWS was not associated with HQ-CT and ZBI scores, except for obese individuals who had significantly higher HQ-CT scores when compared to normal weight PWS individuals. We looked at PWS symptoms and care-related issues that impacted individuals and caregivers the most. We found that care-related tasks had the biggest negative impact on caregivers of children aged 0-4 y, whereas anxiety, temper tantrums, and oppositional behaviors of older individuals with PWS had the biggest impact on their caregivers concomitant with their high caregiver burden. Finally, we assessed the variability of HQ-CT and ZBI over 6 months in a subgroup of 83 participants. Overall, neither measure differed between 6 months and baseline. Most individual's absolute HQ-CT score changes were between 0-2 units, whereas absolute ZBI score changes were between 0-6 points. Changes in the caregiver's or individual's life had little or no effect on HQ-CT and ZBI scores., Conclusions: This study demonstrates a relationship between hyperphagia and caregiver burden and sheds light on predominant symptoms in children and adolescents that likely underly PWS caregiver burden. The stability and relationship between HQ-CT and ZBI support ZBI as an additional outcome measure in PWS clinical trials., Competing Interests: We have the following interests: The study was funded by the PWS- Clinical Trial Consortium (www.pwsctc.org) who Nathalie Kayadjanian, Lauren Roth-Schwartz, and Theresa V. Strong are affiliated with. There are no patents, products in development or marketed products to declare. This does not alter our adherence to all the PLOS ONE policies on sharing data and materials, as detailed online in the guide for authors. DP is the owner and JM is employed by Excelsus Statistics. This does not alter our adherence to PLOS ONE policies on sharing data and materials

The co-design of a mobile health (mHealth) application for family caregivers of people with dementia to address functional disability care needs is presented. Participants included family caregivers of people with dementia, aged care nurses, physicians, occupational therapists, and information technology (IT) experts. The co-design process involved two phases: (1) needs assessment phase (an online survey and in-depth interviews with family caregivers and expert consultation); and (2) development of an mHealth application (content and prototype development). Data triangulation from phase one informed the content of the application. Data triangulation resulted in three content modules: "an overview of dementia and care," "management of daily living activities," and "caregivers' health and well-being." The content was based on contemporary literature, and care guidelines with input from family caregivers and dementia care experts. IT engineers developed the mHealth application. In this study, an Android-based mHealth application was designed to address the functional care needs of family caregivers and the co-design process ensured the incorporation of end-users' real-world experiences and the opinions and expertise of key stakeholders in the development of the application prototype.It is to be noted that before releasing the application into the app store, testing its feasibility and effectiveness is essential.

Objective: Psychoeducational parent training is an economic way to provide care for parents of children newly diagnosed with an autism spectrum disorder (ASD). This study explores pre-post effect sizes of the manualized autism-specific parent training FAUT-E (Frankfurter Autismus-Elterntraining). Method: Two behaviorally trained therapists worked with 6-10 parents in eight group sessions. Twenty-four parents of 24 children with ASD participated in the study. Outcomes were child- and parent-related measures obtained at T0 (first measurement), T1 (second measurement), T2 (postintervention), and T3 (3 months after intervention). Results: Children showed improved behavior in the parent-rated Aberrant Behavior Checklist (ABC) total score after therapy ( p = .001; ES T1T2 = .73) and at T3 ( p = .018; ES T1-T3 = -.51), and a lower intensity of parent-rated problem behavior at T3 ( p = .031; ES T1-T3 = -.46). Parental measures did not change. Conclusions: This study found medium pre-post effects on the child's behavior by FAUT-E between T1 and T2/T3; these were not observed between the measurements T0-T1. FAUT-E was easy to implement and did not increase parental stress. This is in line with results of studies on other training programs to teach parents to use effective behavioral strategies with ASD.

This study aimed to determine the difficulties that the mothers of infants with a cleft lip and/or palate (CL/P) go through, the problems they encounter in this process, and how they perceive the support of healthcare professionals, families, and friends. The study used a phenomenological approach from qualitative research methods. The study sample included 18 mothers of 0 to 3-month-old infants with CL/P. The data were collected using socio-demographic information form and semi-structured interview form. The data obtained from the interviews were evaluated using content and thematic analysis approaches. On the basis of the interviews conducted with mothers of infants with CL/P, the following themes emerged: (a) "unexpected event: having an infant with CL/P," (b) "using social media," (c) "stigma," and (d) "uncertainty of long-term treatment." In this study, it was determined that mothers experienced shock, confusion, sadness, and disappointment in this process; therefore, they used social media to seek support from the families as well as conducted research on the disease that involved a lot of uncertainty due to long-term treatments. The present study can help healthcare professionals, who play a role in the care and treatment of infants with CL/P, to understand and know what mothers need in the preoperative period., (© 2020 Japanese Teratology Society.)

There is increasing evidence that subjective caregiver burden is an important determinant of clinically significant anxiety in family carers. This meta-analysis aims to synthesise this evidence and investigate the relationship between subjective caregiver burden and anxiety symptoms in informal caregivers. We searched PubMed, CINAHL and PsycINFO up to January 2020. Combined estimates were obtained using a random-effects model. After screening of 4,312 articles, 74 studies (with 75 independent samples) were included. There was a large, positive association between subjective caregiver burden and anxiety symptoms (r = 0.51; 95% CI = 0.47, 0.54; I2 = 0.0%). No differences were found in subgroup analyses by type of study design (cross-sectional vs. longitudinal), sampling, control of confounders or care-recipient characteristics. Subjective caregiver burden is an important risk factor for anxiety in informal caregivers. Targeting subjective caregiver burden could be beneficial in preventing clinically significant anxiety for the increasing number of family carers worldwide., Competing Interests: The first author was the chief investigator of two studies meeting inclusion criteria for this review. This does not alter our adherence to PLOS ONE policies on sharing data and materials. There are no other known conflicts of interest.

Objectives　The purpose of this study was to understand the experience of grown-up children with parents suffering from mental illness during their elementary, junior high, and high school years, and the consultation situations at their schools.Methods　A web-based questionnaire survey was conducted on 240 grown-up children who had participated in groups for children with parents suffering from mental illness. The analysis was a simple tabulation and compared the consultation history inside and outside the school environment, according to the respondent's age. Free-response descriptions were categorized according to the content.Results　A total of 120 respondents answered, ranging in age from 20 to over 50 years, with the majority being women (85.8%). Their mothers were the most likely parent to suffer from a mental illness (67.5%), and their estimated age at illness onset was before entering elementary school (73.1%).　During their elementary, junior high, and high school years, 57.8-61.5% of the respondents provided emotional care, and 29.7-32.1% did household chores. When they were in elementary school, most recognized adult fights (62.4%) and experienced attacks by parents (51.4%). Signs that others could have noticed included the fact that parents did not visit the school or talk to teachers, being bullied, forgetfulness, absenteeism, arriving late for school, and academic deterioration. Nearly half of the respondents (43.2-55.0%) hid their challenges during their elementary, junior high, and high school years. They were aware of teachers' prejudice towards mental illness, discriminatory behavior, and lack of consideration for privacy. At the same time, many respondents wanted teachers to be concerned about their circumstances and listen to their stories.　More than half of the respondents (62.7-80.7%) did not approach school staff, who did not notice their problems. When they were high school students, they had an inadequate consultation environment or were unprepared to consult. The easiest person to approach was the teacher in charge.Conclusion　Children with parents suffering from a mental illness were those most in need of support, while being the least connected to sources of support. Schools need to support children to become aware of their problems at home, and teachers need to pay more attention to their students, and listen to them carefully, including to what they may not say.

Purpose: The purpose of this cross-sectional study was to determine the caregiving burden, depression and anxiety of family caregivers of Turkish patients with cancer and the affecting factors., Methods: This cross-sectional study was conducted between January-May 2018 with one hundred and fifty-eight caregivers and one hundred and fifty-eight patients with cancer who were treated at a university hospital in Edirne, Turkey. Data were collected with a questionnaire form, Zarit Burden Interview (ZBI) Scale and the Hospital Anxiety Depression Scale (HADS)., Results: This study found that 51.3% of the patients with cancer were male, 70.3% of the caregivers were female and more than half of them (57.0%) were the spouses of the patients. The mean ZBI score of the caregivers was 24.62 ± 14.19. There was a positive relationship between the ZBI scores and HADS scores of family caregivers (p < 0.05). As the caregiving burden of caregivers increased, their anxiety and depression levels were increased too. It was found that as the caregiving duration of family caregivers increased, the caregiving burden increased, and caregivers' anxiety depression scores got worse (p < 0.05). In the multivariate analysis, the duration of caregiving per day/hours, ECOG score and the age of the caregiver independently affected the caregiving burden (p < 0.05). As the functional status of the patient with cancer got worse, caregiving burden increased. Caregiving burden was found to be higher in those who were younger, female and giving care for longer times per day (p < 0.05)., Conclusion: This study found that as the caregiving burden and caregivers' daily patient care duration increased, the level of anxiety and depression increased too. Caregivers of patients with cancer should take appropriate psychological intervention to decrease their distress. In addition, we thought that healthcare professionals must consider the factors affecting the caregiving burden which affect the patient care directly., (Copyright © 2020. Published by Elsevier Ltd.)

Importance: Caregiver strain has been shown to be associated with adverse effects on caregivers' health, particularly among those with cardiovascular disease. Less is known about the association of caregiver strain with health behaviors among caregivers with diabetes, a disease that requires a high degree of self-care., Objective: To examine the association between caregiver strain and diabetes self-care among caregivers with diabetes., Design, Setting, and Participants: This cohort study was conducted between July 13, 2018, and June 25, 2020, using data on 795 US caregivers aged 45 years or older with self-reported diabetes from the Reasons for Geographic and Racial Differences in Stroke (REGARDS) study, which comprised 30 239 Black and White adults 45 years or older throughout the US enrolled from January 2003 to October 2007., Exposures: Caregiver strain, assessed by self-report in response to the question, "How much of a mental or emotional strain is it to provide this care?" Response options were no strain, some strain, or a lot of (high) strain., Main Outcomes and Measures: Diabetes self-care, which was assessed across 4 domains (Mediterranean diet adherence, physical activity, smoking status, and medication adherence), and a composite self-care score summing performance across these domains. The association between caregiver strain and diabetes self-care was examined with multivariable Poisson regression adjusting for demographic, clinical, physical and mental functioning, and caregiving covariates., Results: Among the 795 caregivers with diabetes included in the study, the mean (SD) age was 63.7 (8.6) years, 469 (59.0%) were women, and 452 (56.9%) were Black individuals. Overall, 146 caregivers (18.4%) reported high caregiver strain. In unadjusted models, high caregiver strain was associated with less physical activity (prevalence ratio [PR], 0.66; 95% CI, 0.45-0.97), low medication adherence (PR, 0.80; 95% CI, 0.68-0.94), and worse self-care (PR, 0.65; 95% CI, 0.44-0.98). In adjusted models, the association between some and high caregiving strain with low medication adherence remained significant (adjusted PR: some strain, 0.88 [95% CI, 0.78-0.99]; high strain, 0.83 [95% CI, 0.69-0.99])., Conclusions and Relevance: In this cohort study of US adult caregivers with diabetes, a high level of strain was associated with low medication adherence. Increased awareness of the prevalence of caregiver strain and potential ramifications on caregivers' self-care appears to be warranted among health care professionals and caregivers.

The provision of care to older persons can impose significant burden on those providing care, burdens influenced by care recipient characteristic, caregiver attributes and availability of social support. This paper focuses on identifying relationships between caregiver burden and the socio-demographic, health and functional status attributes of care recipients age 60 years and older in Jamaica. A nationally representative cross-sectional study was done among persons providing non-institutional care for a single person 60 years and older. Data were obtained from a total of 180 caregivers from the four geographic health regions of Jamaica using the Zarit Burden Interview and a 44-question structured questionnaire. Associations between caregiver burden and socio-demographic, health and functional status of care recipients were examined and logistic regression applied to ascertain independent predictors of caregiver burden. The results revealed statistically significant relationships between caregiver burden and care recipients' receipt of conditional cash transfer grants and the ability to toilet independently. In multivariate analysis, ability to toilet remained a significant predictor of caregiver burden-Caregivers who had care recipients who were able to toilet independently were 71% less likely to have mild to severe caregiver burden compared to those who had care recipients that were not able to toilet (OR 0.29; 95% CI 0.14-0.57). Families, health care providers, social workers, state actors and caregivers should take this into account as they develop strategies to mitigate associated caregiver burden.

Background: Pre-loss grief increases as dementia advances. Caregivers who experience pre-loss grief face risks to their own physical and psychological health., Objective: The study examined factors associated with pre-loss grief in caregivers of older adults with dementia with Lewy bodies (DLB) to determine whether overall caregiver experiences differ based on the stages of DLB in care recipients. The study also compared pre-loss grief in caregivers of DLB patients with that in caregivers of patients with Alzheimer's disease (AD) and other dementias., Method: Using a cross-sectional design, 714 caregivers of older adults with dementia (488 DLB, 81 AD, 145 other dementias) completed an online survey on pre-loss grief. Multivariate linear regression identified risk factors associated with pre-loss grief and analysis of variance examined whether pre-loss grief in caregivers differed significantly based on type of dementia or stage of DLB., Results: Being the caregiver of a spouse, lower level of caregiver well-being, lower psychological well-being of the caregiver, and higher level of burden were associated (p < 0.005) with increased pre-loss grief in caregivers of older adults with DLB. There was no significant difference in caregiver burden, well-being, or depression according to the various stages of DLB (mild, moderate, severe, deceased) in the care recipients. There was no significant difference in pre-loss grief in caregivers of DLB care recipients compared to caregivers of patients with other dementias., Conclusion: Assessment of DLB caregivers and appropriate interventions should be conducted to reduce their burden and emotional distress to decrease the incidence of pre-loss grief.

Introduction: Health systems in numerous countries around the world are suffering a serious burden as a consequence of the COVID-19 pandemic. As a result of this situation, the follow-up of such chronic diseases as dementia may be at risk. Similarly, neuropsychiatric complications related to lockdown measures may also be neglected; Argentina's lockdown has been the longest implemented in Latin America. This study aims to determine the frequency of the different types of medical consultations for neurocognitive disorders and the predictors for requiring consultation since the beginning of the lockdown., Methods: We performed a descriptive, observational, cross-sectional study based on data collected through an online survey., Results: Data were collected on 324 participants, with 165 (50.9%) having had at least one medical consultation. Consultations were held by telephone in 109 cases (33.6%), by e-mail in 62 (19.1%), by video conference in 30 (9.3%), and at the emergency department in 23 (7.1%). Predictors of requiring consultation were Clinical Dementia Rating scores ≥1 (P<.001) and diagnosis of Alzheimer disease (P=.017). Higher Neuropsychiatric Inventory scores were found in the group of respondents who did require medical consultation (P<.001), but no significant differences were found between groups for Zarit Burden Interview scores., Conclusion: We identified a high prevalence of behavioural disorders and caregiver burden during lockdown. Nevertheless, only 50% of respondents had sought medical consultation (by telephone or email in 52.7% of cases). Care of people with dementia must be emphasised, guaranteeing follow-up of these patients., (Copyright © 2020 Sociedad Española de Neurología. Publicado por Elsevier España, S.L.U. All rights reserved.)

Background: Dementia is commonly accompanied by neurobehavioral symptoms; however, the relationship between such symptoms and health-related outcomes is unclear., Objective: To investigate the impact of specific neurobehavioral symptoms in dementia on healthcare resource use (HCRU), patient quality of life (QoL), and caregiver burden., Methods: Data were taken from the 2015/16 Adelphi Real World Dementia Disease Specific Programme™, a point-in-time survey of physicians and their consulting dementia patients. Multiple regression analyses were used to examine associations between patient symptom groups and health-related outcomes., Results: Each patient symptom group of interest (patients with agitation/aggression and related symptoms [AARS] with psychosis, patients with AARS without psychosis, and patients with other behavioral symptoms) had a positive association with HCRU variables (i.e., HCRU was greater), a negative association with proxy measures of patient QoL (i.e., QoL was decreased), and a positive association with caregiver burden (i.e., burden was greater) compared with patients with no behavioral symptoms (control group). The magnitude of effect was generally greatest in patients with AARS with psychosis. Regression analysis covariates that were found to be most often significantly related to the outcomes were dementia severity and the patients' living situation (i.e., whether they were in nursing homes or living in the community)., Conclusion: Combinations of behavioral symptoms, particularly involving AARS plus psychosis, may have a detrimental impact on health-related outcomes such as HCRU, patient QoL, and caregiver burden in dementia. Our results have implications for intervention development in patients who report clusters of symptoms and caregivers, and for identifying at-risk individuals.

Background: The Caregiver Reaction Assessment (CRA) is considered one of the well-developed instruments for measuring the multidimensional burden of family caregivers. To date, there is no available validated instrument to assist healthcare professionals in measuring the caregiver's burden in Indonesia., Objective: To translate the CRA from English into Indonesian and to conduct psychometric testing of this CRA-Indonesian version (CRA-ID) with family caregivers of patients with cancer., Methods: Cross-cultural translation and psychometric testing were conducted. Confirmatory factor analysis and exploratory factor analysis were performed to check, explore, and confirm the best model for the CRA-ID; internal consistency was also measured., Results: A total of 451 respondents participated, of whom 40 were involved in the feasibility testing. Confirmatory factor analysis with the original factors of the CRA revealed that the fit was not satisfactory, and adaptation was needed. Through exploratory factor analysis, the best model fit was developed, and confirmatory factor analysis was performed again. Five factors from the original instrument were confirmed with an explained variance of 54.89%. Almost all items in the CRA-ID appeared to have a similar structure as the original version. Cronbach's α's ranged between .64 and .81., Conclusions: The CRA-ID appeared to be feasible, valid, and reliable for measuring the burden of family caregivers of patients with cancer in Indonesia., Implications for Practice: Nurses can use the CRA-ID to measure family caregivers' burden. Its availability in the Indonesian language enhances the opportunity to conduct international comparisons of family caregiver burden using the same instrument.

Background: In a previous study, we assessed burnout in geriatric healthcare workers during the first lockdown that lasted from March to May 2020 in France, in response to the COVID-19 crisis., Objective: We carried out a follow-up study to assess burnout in the same population during the second lockdown that was implemented at the end of October 2020., Methods: We used an online survey to assess burnout in terms of exhaustion and disengagement in a sample of 58 geriatric healthcare workers., Results: We found higher levels of exhaustion, disengagement, and burnout among geriatric healthcare workers during the second than during the first lockdown. We also found high levels of exhaustion but moderate disengagement and burnout during the second lockdown., Conclusion: The increased exhaustion, disengagement, and burnout during the second lockdown can be attributed to the increased workload in geriatric facilities throughout this crisis and during the second lockdown due to shortage in staff and increased number of shifts and allocated duties. The high levels of exhaustion reported among geriatric healthcare workers during the second lockdown can reflect their physical fatigue, as well as their feelings of being emotionally overextended and exhausted by their workload.

Background/objective: Various behavioral interventions are recommended to combat the distress experienced by caregivers of those with cognitive decline, but their comparative effectiveness is poorly understood., Design/setting: Caregivers in a comparative intervention study randomly had 1 of 5 possible interventions suppressed while receiving the other four. Caregivers in a full clinical program received all 5 intervention components. Care partner outcomes in the study group were compared to participants enrolled in a full clinical program., Participants: Two hundred and seventy-two dyads of persons with amnestic mild cognitive impairment (pwMCI) and care partners enrolled in the comparative intervention study. 265 dyads participated in the full clinical program., Intervention: Behavioral intervention components included: memory compensation training, computerized cognitive training, yoga, support group, and wellness education. Each was administered for 10 sessions over 2 weeks., Measurements: A longitudinal mixed-effect regression model was used to analyze the effects of the interventions on partner burden, quality of life (QoL), mood, anxiety, and self-efficacy at 12 months follow-up., Results: At 12 months, withholding wellness education or yoga had a significantly negative impact on partner anxiety compared to partners in the clinical program (ES=0.55 and 0.44, respectively). Although not statistically significant, withholding yoga had a negative impact on partner burden and mood compared to partners in the full clinical program (ES=0.32 and 0.36, respectively)., Conclusion: Our results support the benefits of wellness education and yoga for improving partner's burden, mood, and anxiety at one year. Our findings are the first to provide an exploration of the impact of multicomponent interventions in care partners of pwMCI., Competing Interests: No conflict of interest was reported by all authors

Background: Informal caregivers (IC) are often overshadowed by the attention required by the terminally ill. This study aims to reveal the estimated proportion of caregiver burden, psychological manifestations and factors associated with caregiver burden among IC in the largest specialized Palliative Care Unit (PCU) in Malaysia., Methods: This was a cross-sectional study involving IC attending a PCU. Caregiver burden and psychological manifestations were measured using previously translated and validated Zarit Burden Interview and DASS-21 questionnaires respectively. Two hundred forty-nine samples were selected for analysis., Result: The mean ZBI score was 23.33 ± 13.7. About half of the population 118(47.4%) was found to experienced caregiver burden whereby majority have mild to moderate burden 90(36.1%). The most common psychological manifestation among IC is anxiety 74(29.7%) followed by depression 51(20.4%) and stress 46(18.5%). Multiple logistic regression demonstrated that women who are IC to patients with non-malignancy were less likely to experience caregiver burden. IC who were highly educated and spent more than 14 h per day caregiving were at least twice likely to experience caregiver burden. Finally, those with symptoms of depression and anxiety were three times more likely to suffer from caregiver burden., Conclusion: Caregiver burden among IC to palliative patients is prevalent in this population. IC who are men, educated, caregiving for patients with malignancy, long hours of caregiving and have symptoms of depression and anxiety are at risk of developing caregiver burden. Targeted screening should be implemented and IC well-being should be given more emphasis in local policies.

Background: Most elderly people undergoing peritoneal dialysis (PD) treatment have a high incidence of frailty, cognitive impairment and emotional disturbance leading to a significant impact on families. The burden experienced by the family caregivers could affect their physical and emotion health. The objective of this study was to examine the level of burden on family caregivers of elderly adults receiving PD and to identify any contributing factors., Materials and Methods: This was a cross-sectional study employing convenience sampling. Patient-caregiver dyads were recruited from the outpatient clinic of a university hospital in China in 2019. Caregivers provided information on their perceived burden and health-related quality of life. The elderly patients reported their functional dependence and depressive symptoms in the same interview. Linear regression analyses were used to determine the factors contributing to caregivers' burden., Results: Sixty patient-caregiver dyads were recruited. The patients had a mean age of 70.7 ± 7.4 years. The caregivers reported moderate levels of burden having ZBI score of 30.5 ± 15.9. Multivariate analyses showed that being female, perceiving one's financial status as insufficient, a low level of social support for the caregiver, depressive symptoms in the patients and disability in carrying out the instrumental activities of daily life were statistically significant predictors of caregiver burden (adjusted R 2  = 0.46, p < 0.001)., Conclusion: Elderly adults receiving PD who experience physical dependence and depressive symptoms are a burden for caregivers. In response to this challenge, interventions designed with the goal of supporting the emotional and mental wellbeing of caregivers are warranted., (© 2020 European Dialysis and Transplant Nurses Association/European Renal Care Association.)

Objectives: To examine perceived stigma and its correlates in remitted patients with mental illnesses and their caregivers., Methods: In patients with mental illnesses, their perceived stigma (Perceived Devaluation Discrimination Scale), endorsed secrecy (Secrecy scale), self-esteem (Rosenberg Self-Esteem Scale), functioning (Work Social Adjustment Scale), and emotional wellbeing (Well Being Index) were assessed. In caregivers, their perceived stigma towards patients (Devaluation of Consumer Scale) and families (Devaluation of Consumer Families Scale), emotional wellbeing (Well Being Index), and depressive symptoms (Centre for Epidemiological Studies-Depression scale) were assessed. Differences between diagnoses were examined using ANOVA. Correlation between perceived stigma among patients and caregivers was studied., Results: Of 152 patients with mental illnesses, 76.3% and 85.53 % reported moderate-to-high levels of perceived stigma and endorsed secrecy, respectively. Of 152 caregivers, 40.13% and 25.65% reported moderate-to-high levels of perceived stigma towards patients and families, respectively. Overall, patients had high levels of perceived stigma and endorsed secrecy, low self-esteem, moderate functional impairment, and extremely poor emotional wellbeing. There were significant differences across different diagnostic categories with respect to self-esteem, functioning, perceived stigma, secrecy, and emotional wellbeing. Patients with substance use disorders reported highest perceived stigma, lowest self-esteem, and most severe functional impairment, and their caregivers reported highest perceived stigma towards patients and families, most-reduced emotional wellbeing, and highest rates of depressive symptoms. Patients' perceived stigma was not associated with caregivers' perceived stigma., Conclusion: Perceived stigma is prevalent among patients and caregivers and affects their quality of life. The stigma associated with substance use disorder merits special attention., Competing Interests: All authors have no conflict of interest to disclose.

Objective: The present work investigated haemophilia caregiver and patient characteristics associated with change in negative and positive aspects of caregiving. Design: Web-based survey data were collected from haemophilia A or B caregivers at baseline and two years later. Main Outcome Measures: Outcomes included Burden Summary and Positive Emotions change scores from the Haemophilia Caregiver Impact measure. Results: The sample included 323 caregivers (71% response rate; mean age 40, 90% female). Brief Appraisal Inventory Principal Components Analysis with varimax rotation yielded five scores: Awareness of Challenges, Fulfillment and Growth, Stay Positive, Social Comparison, and Interpersonal Problem-Solving . Regression analyses revealed that caregivers with more health conditions, who care for patients with increased bleeds and worse pain, and who focused more on Awareness of Challenges, Social Comparisons, and Interpersonal Problem-Solving reported worsened burden over follow-up (Adj. R 2 = 0.37). Prioritisation of Stay[ing] Positive and reduced emphasis on Interpersonal Problem-Solving were associated with increased Positive Emotions (Adj. R 2 = 0.32). Conclusion: Caregivers who focused less on a life unfettered by caregiving, comparing themselves to others, and interpersonal problem-solving and more on staying positive reported reductions in burden and improvements in positive emotions. These findings could translate to multicomponent psychoeducational interventions to help caregivers buffer haemophilia's impact.

Background: Caregiving to patients with epilepsy (PWE) is often very stressful for family caregivers and puts a heavy caregiver burden (CB) on them. The aim of this study was to evaluate the effects of Fordyce's fourteen Fundamentals for Happiness Program on happiness and CB among the family caregivers of PWE., Methods: This randomized controlled trial was conducted on seventy family caregivers of PWE. Participants were purposively recruited from the Comprehensive Health Center in Shahrekord, Iran, and randomly allocated to either an intervention or a control group. Participants in the control group received conventional health-related educations in four one-hour group sessions, while participants in the intervention group received the Fordyce's fourteen Fundamentals for Happiness Program in eight one-hour group sessions. Happiness and CB in both groups were assessed at three time points, namely before, immediately after, and two months after the intervention. Data were analyzed using the SPSS program (v. 18.0)., Findings: There were no significant differences between the control and the intervention groups regarding participants' demographic characteristics and their pretest mean scores of happiness and CB (P > 0.05). The mean scores of happiness and CB in the control group did not significantly change (P > 0.05), while the mean score of happiness significantly increased and the mean score of CB significantly decreased in the intervention group across the three measurement time points (P < 0.05). Consequently, the mean score of happiness in the intervention group was significantly greater than the control group and the mean score of CB in the intervention group was significantly less than the control group at both posttests (P < 0.01)., Conclusion: The Fordyce's fourteen Fundamentals for Happiness Program is effective in significantly increasing happiness and reducing CB among the family caregivers of PWE. Healthcare providers and policy makers can use this program to reduce problems among these family caregivers., (Copyright © 2020 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved.)

Empathy is considered a positive aspect of caregiving, although in certain circumstances, being empathic might increase the burden of caregivers. The current study assessed the associations between empathy, parental efficacy, and family burden among parents of children who were hospitalized in a psychiatric unit. Specifically, we examined whether the association between empathy and family burden was moderated by the parents' sense of self-efficacy. Seventy parents of children with psychiatric disorders, hospitalized in an inpatient psychiatric unit, filled out questionnaires of empathy, parental efficacy, and family burden. Results supported a moderating role of parental efficacy between empathy and family burden (interaction effect: β = -1.72, p = .0406). Specifically, empathy was positively related to family burden among parents with low self-efficacy (conditional effect = 0.70, p = .032) and negatively related to family burden among parents with high self-efficacy (conditional effect = -0.39, p = N.S). Implications for practice include the importance of self-efficacy and address the possible negative implications of empathy among parents of children treated in a psychiatric hospital., (© 2019 Family Process Institute.)

The number of hemodialysis patients is increasing worldwide, and the caregivers of these patients experience a great burden. This study was conducted to examine the relationship between caregiver burden and spiritual well-being in caregivers of hemodialysis patients in Kerman, Iran. This correlational study was conducted on 382 caregivers of hemodialysis patients. Data were collected using the Caregiver Burden Inventory (24 items) and Ellison and Paloutzian 20-Item Spiritual Well-being Questionnaire. Data were analyzed by descriptive and inferential statistics (t test, ANOVA, Spearman correlation, and linear regression analysis) in SPSS 20 software. The findings showed that 45 (11.8%) caregivers had mild, 214 (56%) moderate, and 123 (32.2%) high caregiver burden. Furthermore, 1 (0.3%) caregiver had mild, 349 (92.4%) moderate, and 32 (8.4%) high spiritual well-being. Also, Spearman correlation test showed a significant reveres relationship between caregiver burden and spiritual well-being scores (p < 0.001, r = - 0.41). Moreover, the results of the regression analysis showed that the patient's income, frequency of patient dialysis per week, and patient's need to receive care and spiritual well-being were predictors of caregiver burden, which explained 41% of the burden in caregivers. The results of this study revealed that spiritual well-being was negatively related to caregiver burden and was one of its predictors. Therefore, spirituality can be used as a low-cost and effective intervention to reduce the caregiver's burden.

Background: Caregivers of patients with Parkinson's Disease (PD) often provide important support in the pre- and postoperative phase of Deep Brain Stimulation (DBS). DBS-associated changes of patient-functioning may affect caregiver wellbeing and impact the support system. Factors influencing caregiver-wellbeing under these circumstances are incompletely known., Objective: to systematically review studies of sufficient methodological quality on the impact of DBS on caregivers of PD patients., Methods: using PRISMA guidelines, major databases were searched up to May 2020. Five subcategories were identified: Caregiver burden, Caregiver cognitive and psychiatric functioning, Caregiver Quality of Life (QoL), Marital Satisfaction/Conflicts, and Caregiver Satisfaction. Quality was assessed using an in-house checklist., Results: 293 studies were identified; 12 were ultimately included. Caregiver burden, psychiatric and cognitive functioning and QoL remained relatively unchanged. Results on marital satisfaction/conflicts were contrasting: an increase in marital conflicts despite improved relationship quality scores DBS. Caregiver satisfaction with surgery was low with 50-58% of caregivers being disappointed with DBS outcomes. Concerning caregiver related factors: a higher preoperative caregiver QoL, younger age, lower scores on psychiatric rating scales, and more favourable preoperative relationship quality scores, were associated with better caregiver wellbeing. A favourable patient-profile includes younger age and age-at-onset, shorter disease duration, lower medication requirements, and lower scores on psychiatric rating scales., Conclusion: Although most patient- and caregiver-related subdomains remained unchanged after DBS, dissatisfaction among caregivers and marital problems may constitute a large risk for a well-functioning patient-caregiver dyad. Early recognition of potential problem situations may improve post-DBS care for both patients and caregivers., (Copyright © 2020 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: Informal caregiving of stroke survivors often begins with intensity compared with the linear caregiving trajectories in progressive conditions. Informal caregivers of stroke survivors are often inadequately prepared for their caregiving role, which can have detrimental effects on their well-being. A greater depth of understanding about caregiving burden is needed to identify caregivers in most need of intervention. The purpose of this study was to examine caregiver burden and associated factors among a cohort of informal caregivers of stroke survivors., Methods: A cross-sectional study of 88 informal caregivers of stroke survivors was completed. Caregiver burden was determined with the Zarit Burden Interview, caregiver depressive symptoms were measured with the Patient Health Questionnaire-9, and stroke survivor functional disability was assessed with the Barthel Index. Ordinal logistic regression was used to identify independent factors associated with caregiver burden., Results: Forty-three informal caregivers (49%) reported minimal or no caregiver burden, 30 (34%) reported mild to moderate caregiver burden, and 15 (17%) reported moderate to severe caregiver burden. Stroke survivor functional disability was associated with informal caregiver burden (P = .0387). The odds of having mild to moderate caregiver burden were 3.7 times higher for informal caregivers of stroke survivors with moderate to severe functional disability than for caregivers of stroke survivors with no functional disability. The presence of caregiver depressive symptoms was highly correlated with caregiver burden (P < .001)., Conclusion: Caregivers of stroke survivors with functional disabilities and caregivers experiencing depressive symptoms may have severer caregiver burden. Trials of interventions aimed at decreasing informal caregiver burden should consider the potential impact of stroke survivors' functional disability and the presence of depressive symptoms.

Background: While COVID-19 outbreak has had adverse psychological effects in children with special needs, the mental state and burden on their caregivers during this pandemic has yet to be reported., Aims: The objectives of this study were to describe the mental health status and the change in perceived strain among caregivers during the COVID-19 outbreak., Methods and Procedures: Two hundred sixty four caregivers completed an online survey that assessed demographics, use and perspective on tele-rehabilitation, homecare therapy, caregiver's strain and mental health., Outcomes and Results: The prevalence of depression, anxiety and stress symptoms were found to be 62.5 %, 20.5 % and 36.4 % respectively. A significant difference in caregiver strain (p <  0.001, effect size = 0.93) was observed during the outbreak compared to levels pre-outbreak (pre-outbreak strain was measured retrospectively). Caregivers not using tele-rehabilitation along with a perception of it being a poor medium for rehabilitation were at greater risks for poor mental health whereas a negative perception on homecare therapy were strongly associated with higher psychological symptoms and strain., Conclusions and Implications: This study identified a high prevalence of depression and significant change in strain displayed by caregivers during the COVID-19 outbreak. We identified several factors associated with poor mental health and perceived strain that can be used to help safeguard caregivers., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Background and objectives : The COVID-19 pandemic has had an unprecedented reliance on informal caregivers as one of the pillars of healthcare systems. The aim of this study was to assess the quality of life of informal caregivers during the COVID-19 epidemic in Serbia. Materials and Methods : A cross-sectional study was conducted among informal caregivers during the COVID-19 epidemic in Serbia. Physical and mental quality of life was measured by the 36-Item Short-Form Health Survey. Additional data included sociodemographic characteristics, caregiver and care recipient characteristics, and COVID-19 related concerns. The qualitative component was performed using focus groups and individual in-depth interviews. Results : Out of 112 informal caregivers enrolled, most were female (80%), and the average age was 51.1 ± 12.3 years. The majority was delivering care to one person, who was a family member, on a daily basis (86.4%, 92%, and 91.1%, respectively). In multiple regression models, significant predictors of caregivers' physical health were delivering care to a family member and a higher level of care complexity, while significant predictors of caregivers' mental health were a higher level of care complexity and increased concerns about self-health and the health of the person being cared for due to the COVID-19 epidemic. Conclusions : Informal caregivers are experiencing negative physical and mental health outcomes during the COVID-19 epidemic in Serbia.

Background: One of the interventions for dysphagia is diet modifications, involving a variety of resources and consumables. In South Africa, where 49% of the population live below the poverty line, the necessities for it are not always feasible for the patient and their family. This coupled with the responsibility of caring for a loved one with disability can culminate into caregivers experiencing third-party disability (TPD)., Objective: To describe the experiences of TPD of caregivers when implementing dysphagia management strategies at home within an economically developing country context., Methods: This was a qualitative study using phenomenological principles. Data were collected using a semi-structured self-developed interview tool at three tertiary level public sector hospitals. Seven participants and six caregivers were interviewed. Rigour was obtained through credibility, triangulation, transferability, dependability and confirmability. The data were analysed using a thematic content analysis technique following a top-down approach to coding., Results: The use of diet modification is an appropriate management strategy if the patients' access and contextual limitations have been taken into consideration. It was evident that the caregivers had multiple International Classification of Functioning, Disability and Health domains affected, which restricted their daily functioning including activities, participation and environmental and personal factors., Conclusion: The management of dysphagia needs to be family centred and the caregiver's role and needs have to be considered by all team members when determining long-term management plans. The specific area of how the caregiver's quality of life was experienced also required further exploration.

Objectives: This study investigates the relationship of caregiver demographics, caregiving intensity, caregiver support use, and aspects of the caregiving situation to a self-reported measure of unmet need among U.S. informal caregivers of older adults living at home with various conditions., Methods: Response data from 1,558 caregiver participants interviewed by telephone during the December 2016 baseline period of the Outcome Evaluation of the National Family Caregiver Support Program were used. Caregivers who responded "Definitely No" to the question "Are you receiving all the help you need?" were classified as reporting unmet need. Logistic regression was used to find significant factors associated with unmet need among the full sample and among caregivers tiered by three levels of burden., Results: Unmet need was reported by 22% of the caregivers. In a fully adjusted model, unmet need was predicted by higher levels of caregiving intensity, non-White race of the caregiver, and the caregiver not feeling appreciated by their care recipient. Other predictors associated with unmet need were no use of caregiver educational services, fewer respite hours, not living in a rural area, and caregiver having an education past high school., Discussion: Caregivers who do not feel appreciated by their care recipient and non-White caregivers should be identified as potential targets for intervention to address unmet need, especially if they are also reporting higher levels of caregiver burden. Understanding the factors associated with self-reported unmet need can assist caregiver support programs in measuring and addressing the needs of informal caregivers to support their continued caregiving., (© The Author(s) 2020. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

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 < .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 < .05) mortality risk than those with caregivers reporting neither burden nor benefits. This risk is reduced from 38% higher to 5% higher (p < .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., (© The Author(s) 2020. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objectives: A caregiving stress perspective suggests that caregiving harms psychological well-being in informal caregivers, whereas a caregiving rewards perspective suggests that provision of care benefits psychological well-being. This research examines whether both perspectives apply to caregiving experiences, but differently by the primary location of caregiving (i.e., in-home, other residence, and institution), as well as by gender., Methods: We analyzed depression and life satisfaction in the nationally representative Canadian Longitudinal Study on Aging (N = 48,648), first comparing noncaregivers (N = 27,699) to a combined caregiver group (N = 20,949) and then stratifying caregivers by the primary location of care., Results: When considered as a single group, caregivers suffered relative to noncaregivers in terms of life satisfaction and depression. When stratified by the location of care, only in-home caregivers reported both greater depression and lower life satisfaction. Nonresidential caregivers did not differ significantly in levels of depression from noncaregivers and reported higher life satisfaction. Institutional caregivers reported greater depression than noncaregivers, but did not differ significantly in life satisfaction. These patterns were stronger among women than men., Discussion: Both the caregiving stress and caregiving rewards perspectives are applicable to the caregiving experience, with the stress perspective more applicable to in-home caregivers and the rewards perspective more relevant to nonresidential caregivers. Recommendations include targeted practice focused on the location of care as well as the gender of the caregiver. Given that nonresidential caregivers actually benefit from providing care, interventions need to focus on identifying and bolstering positive aspects of the caregiving experience., (© The Author(s) 2020. Published by Oxford University Press on behalf of The Gerontological Society of America.)

Objective: How does caregivers' life satisfaction shift upon the recovery of an ill spouse? Paradoxically, there is a greater increase in life satisfaction upon death than recovery of a spouse. Our analysis explores this paradox., Method: We follow the two groups of exiting caregivers longitudinally for 4 years from when the partner is still in need of care until the death (N = 152) or recovery (N = 112) of a previously ill partner, comparing their trajectory of life satisfaction. We use the years 2001-2016 of the German-Socio-Economic Panel Study and a growth curve analysis., Results: Contrary to our expectations, bereaved caregivers experience a significantly stronger increase in life satisfaction than spouses whose partners recover from a serious illness, even when we stratify by age, gender and initial life satisfaction to account for significantly different subsample composition. Surprisingly, life satisfaction remains unchanged when the partner recovers. Only if a heavy burden in terms of unpaid care and housework hours or prior care need is lifted, do we observe an increase in life satisfaction among spouses with recovering partners, which is like the one experienced by bereaved caregivers., Discussion: More support for caregivers with high caregiving burdens may alleviate some of the strain associated with spousal caregiving, as-even if the partner dies-a decrease in spousal caregiving hours results in an uplift in life satisfaction., (© The Author(s) 2019. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Background/objectives: To describe the caregiving experiences and physical and emotional needs of family members and friends who provide care to veterans with mental, physical, and cognitive comorbidities., Design: Cross-sectional study., Setting: National telephone surveys administered from 2017 to 2019., Participants: Family caregivers of veterans enrolled in the Veterans Affairs (VA) Program of General Caregiver Support Services between October 2016 and July 2018 who responded to a telephone survey (N = 1,509; response rate = 39%)., Measurements: We examined caregiver burden, depressive symptoms, financial strain, satisfaction with care, amount and duration of caregiving, life chaos, loneliness, and integration of caregiver with the healthcare team using validated instruments. We also collected caregiver demographic and socioeconomic characteristics and asked caregivers to identify the veteran's condition(s) and provide an assessment of the veteran's functioning., Results: Average caregiver age was 62.2 (standard deviation [SD] = 13.7) and 69.8 (SD = 15.6) for veterans. Among caregivers, 76.7% identified at White, and 79.9% were married to the veteran. Caregivers reported having provided care for an average of 6.4 years and spending on average 9.6 hours per day and 6.6 days per week providing care. Average Zarit Subjective Burden score was 21.8 (SD = 9.4; range = 0-47), which is well above the cutoff for clinically significant burden (>16). Caregivers reported high levels of depressive symptoms; the sample average Center for Epidemiologic Studies Depression 10-item Scale score was 11.5 (SD = 7.1; range = 0-30). Caregivers also reported high levels of loneliness and financial strain., Conclusion: Caregivers who care for veterans with trauma-based comorbidities reported intensive caregiving and significant levels of distress, depressive symptoms, and other negative consequences. These caregivers require comprehensive support services including access to health care, financial assistance, and enhanced respite care. Planned expansion of VA caregiver support has the potential to provide positive benefits for this population and serve as a model for caregiver support programs outside the VA health care system., (© 2020 The American Geriatrics Society.)

Problem Identification: Approximately 2.8 million Americans care for an individual with cancer. Because the literature typically describes caregiving experiences within patient age-groups (e.g., pediatrics, geriatrics), the purpose of this narrative review was to describe common and unique burdens and distress among caregivers of cancer-patients of different ages., Literature Search: We identified representative peer-reviewed manuscripts related to caregivers of pediatric, adolescent, young-, middle-, and late-adult oncology patients. We combined search terms "caregiver" and "cancer" with "burden," "distress," and/or age-related terms ("pediatric" or "geriatric"). Included studies focused on factors of caregiver-burden and distress., Data Evaluation/synthesis: Universal cancer-caregiving experiences include negative impacts on work-productivity, finances, social-/family-dynamics, and physical/emotional health. Age-related life experiences shape outcomes; pediatric caregivers may have fewer financial resources, whereas concurrent comorbidities create challenges for geriatric caregivers., Conclusions: Caregiving for cancer patients has universal, shared, and patient age-specific burdens., Implications for Practice: Supportive care based on patient-age may improve caregiver well-being.

Background: In dementia it is necessary that a family member become an informal caregiver. This labour has social, physical and emotional repercussions on the caregiver's health. The objective was to assesses the impact of the INFOSA-DEM intervention on burden and emotional well-being among caregivers of people with dementia, evaluating the effects at 3 and 6 months., Method: We adopted an experimental, non-randomised design with an intervention group and a control group. The intervention group received the intervention and the control group received usual care. The study was carried out in the catchment areas of three centres specialising in the care of people with cognitive impairment in the province of Barcelona., Results: At 3 months, there was an improvement with respect to burden in the intervention group with a significant worsening (P < 0.012) in the control group. Similarly, a positive effect on emotional well-being was observed in the intervention group compared with a small negative effect among controls., Conclusions: Programs addressed to informal caregivers based on psychoeducational and cognitive-behavioural therapies are effective in improving quality of life and emotional well-being, and in reducing burden, with a positive effect on the quality of care provided at home., (© 2020 Japanese Psychogeriatric Society.)

Purpose: Family disruption is often an indirect consequence of providing care for a person with traumatic brain injury (TBI). This article describes the development and preliminary validation of a Family Disruption scale designed for inclusion within the TBI-CareQOL measurement system., Method/design: Five hundred thirty-four caregivers of persons with TBI (service member/veteran n = 316; civilian n = 218) completed the Family Disruption scale, alongside several other measures of caregiver strain and health-related quality of life. Classical test theory and item response theory (IRT)-based analyses were conducted to develop, and establish reliability and validity of, this scale., Results: Exploratory and confirmatory factor analysis, as well as Samejima's graded response model-related IRT fit analyses, supported the development of a 3-item scale. This final scale is scored on a T score metric ( M = 50; SD = 10); higher scores are indicative of more family disruption. Reliability (internal consistency; test-retest stability) was supported for both caregiver groups, and average administration times were under 10 s. Convergent and discriminant validity were supported by strong correlations between Family Disruption and measures of caregiver burden, and smaller correlations with positive aspects of caregiving. As evidence of known-groups validity, caregivers of lower-functioning persons with TBI experienced more family disruption than caregivers of higher functioning individuals., Conclusions: The TBI-CareQOL Family Disruption scale is a brief, reliable, and valid assessment of caregiver perceptions of how caring for an individual with a TBI interferes with family life. This measure is well-suited for inclusion in studies seeking to support family functioning in persons with TBI. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Background/objectives: Although several approaches have been developed to provide comprehensive care for persons living with dementia (PWD) and their family or friend caregivers, the relative effectiveness and cost effectiveness of community-based dementia care (CBDC) versus health system-based dementia care (CBDC) and the effectiveness of both approaches compared with usual care (UC) are unknown., Design: Pragmatic randomized three-arm superiority trial. The unit of randomization is the PWD/caregiver dyad., Setting: Four clinical trial sites (CTSs) based in academic and clinical health systems., Participants: A total of 2,150 English- or Spanish-speaking PWD who are not receiving hospice or residing in a nursing home and their caregivers., Interventions: Eighteen months of (1) HSDC provided by a nurse practitioner or physician's assistant dementia care specialist who works within the health system, or (2) CBDC provided by a social worker or nurse care consultant who works at a community-based organization, or (3) UC with as needed referral to the Alzheimer's Association Helpline., Measurements: Primary outcomes: PWD behavioral symptoms and caregiver distress as measured by the Neuropsychiatric Inventory Questionnaire (NPI-Q) Severity and Modified Caregiver Strain Index scales., Secondary Outcomes: NPI-Q Distress, caregiver unmet needs and confidence, and caregiver depressive symptoms. Tertiary outcomes: PWD long-term nursing home placement rates, caregiver-reported PWD functional status, cognition, goal attainment, "time spent at home," Dementia Burden Scale-Caregiver, a composite measure of clinical benefit, Quality of Life of persons with dementia, Positive Aspects of Caregiving, and cost effectiveness using intervention costs and Medicare claims., Results: The results will be reported in the spring of 2024., Conclusion: D-CARE will address whether emphasis on clinical support and tighter integration with other medical services has greater benefit than emphasis on social support that is tied more closely to community resources. It will also assess the effectiveness of both interventions compared with UC and will evaluate the cost effectiveness of each intervention., (© 2020 The American Geriatrics Society.)