Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic.

INTRODUCTION: Caregivers of adults with epilepsy face unique challenges, yet most studies focus on the impact of epilepsy on those living with the condition, rather than the impact on caregivers. Our objective was to evaluate whether caregivers' pandemic-related changes and experiences - namely those related to their health, healthcare access, and well-being - were associated with their caregiving burden. METHODS: Caregivers of adults with epilepsy (n = 261) were recruited through Qualtrics Panels to participate in an online survey examining health, well-being, COVID-19 experiences, and caregiver burden from October-December, 2020. The burden was measured using the Zarit 12-item measure; the clinically significant burden was defined as a score greater than 16. Adjustments were made to account for burden scores related to exposures of interest. Chi-square tests, t-tests, and generalized linear regression models were used to compare cross-sectional associations between COVID-19 experiences and burden. RESULTS: Over half (57.9%) of caregivers had clinically significant caregiver burden. Most reported increased anxiety (65%), stress (64%), and sense of social isolation (58%) during the pandemic. Many caregivers reported that their sense of control over their life (44%) and their use of healthcare changed (88%) due to COVID-19. In adjusted models, caregivers who reported increased anger, increased anxiety, decreased sense of control, or changes in healthcare utilization during COVID-19 had about twice the odds of having clinically significant caregiver burden compared to caregivers who did not report changes. DISCUSSION: Changes experienced by caregivers of adults with epilepsy during the pandemic were strongly associated with clinically significant levels of caregiver burden. These findings demonstrate the link between mass-level events, such as a pandemic, the burden caregivers of adults with epilepsy may carry, and subsequent psychological outcomes. CONCLUSION: Caregivers of adults with epilepsy may need support to reduce the negative impact of COVID-19-related experiences and should be connected to healthcare and resources that can help alleviate their burden.

Caregiving Situation as a Predictor of Subjective Caregiver Burden: Informal Caregivers of Older Adults during the COVID-19 Pandemic.

The COVID-19 pandemic has created and exacerbated emotional, financial, and technical challenges for informal caregivers of older people. The aim of this study was to explore the caregiving situation and subjective burden of informal caregivers of older family members during COVID-19, and to investigate how a caregiving situation's characteristics predict the subjective burden of care in times of COVID-19. The study was conducted in April and May 2021 via an online access panel. The sample (n = 612) was determined using a screening test that enabled us to focus on a Slovenian population of informal caregivers aged 40+ caring for a person aged 65+ for at least four hours/week on average. Our findings reveal that the subjective burden of care was high among informal caregivers during COVID-19. Multiple regression analysis showed that the provision of activities of daily living, care duration, average hours of care per week, formal care status, and recipients' health problems related to dementia or other memory problems significantly predicted the subjective burden of caregivers. These findings call for better recognition of the role of informal caregivers. The time and effort devoted to informal care should be supported by legislation and social security.

Association between increased caregiver burden and severe psychological distress for informal caregivers during the COVID-19 pandemic in Japan: A cross-sectional study.

OBJECTIVE: During the coronavirus disease 2019 (COVID-19) pandemic, informal caregivers' mental health deteriorated more than that of non-caregivers. We examined the association between increased caregiver burden during the pandemic and severe psychological distress (SPD). METHODS: We used cross-sectional data from a nationwide internet survey conducted between August and September 2020 in Japan. Of 25,482 participants aged 15-79 years, 1,920 informal caregivers were included. SPD was defined as Kessler 6 Scale (K6) score ≥ 13. Self-rated change in caregiver burden was measured retrospectively with a single question item. Binary logistic regression analysis was used to examine the association between SPD and increased caregiver burden during the pandemic, adjusted for demographic, socioeconomic, health, and caregiving variables. To examine the differential association between increased caregiver burden and SPD, interaction terms were added and binary logistic regression was separately conducted for all variables. RESULTS: Participants' mean age was 52.3 years (standard deviation 15.9), 48.8% of participants were male, 56.7% reported increased caregiver burden, and 19.3% exhibited SPD. Increased caregiver burden was significantly associated with SPD (adjusted odds ratio: 1.90; 95% confidence interval: 1.37-2.66). The association between increased caregiver burden and SPD was stronger among caregivers who were married, those undergoing disease treatment, and those with a care-receiver with a care need level of 1-2. CONCLUSIONS: The results revealed that more than half of caregivers reported increased caregiver burden, and increased caregiver burden was associated with SPD during the pandemic. Measures supporting mental health for caregivers with increased caregiver burden should be implemented immediately.

More GP contacts and poorer health of informal caregivers with low socioeconomic status in Germany: results from the population-based DEGS1 and the cross-sectional GPCare-1 study.

OBJECTIVES: Informal caregivers are known to have poorer mental health. Risk factors for caregiver burden include low education, female gender, cohabitation with the care recipient and lack of resources. General practitioners (GPs) have an important role in supporting caregivers. Drawing on data from two surveys, associations between caregivers' socioeconomic status (SES), psychophysical health and GP contacts are analysed. DESIGN: Cross-sectional study. The study draws on data from two surveys (German Health Interview and Examination Survey for Adults, DEGS1 and General Practice Care-1, GPCare-1). SETTING: Germany. PARTICIPANTS: DEGS1: German general population (18+ years) n=7987. GPCare-1: general practice patients (18+ years) n=813. PRIMARY OUTCOME: Psychophysical health, GP contacts and communication. METHODS: Using representative DEGS1 data, the prevalence of informal caregivers, caregivers' burden, chronic stress, various health conditions and frequency of GP contacts were evaluated stratified by SES. Data from the GPCare-1 study addressed caregivers' experiences and communication preferences with GPs. RESULTS: In the DEGS1, the prevalence of caregivers was 6.5%. Compared with non-caregivers, caregivers scored significantly higher for chronic stress (15.45 vs 11.90), self-reported poor health (37.6% vs 23.7%) and GP visits last year (3.95 vs 3.11), while lifestyle and chronic diseases were similar. Compared with caregivers with medium/high SES, those with low SES had a significantly lower prevalence of high/medium caregiver burden (47.9% vs 67.7%) but poorer self-reported health (56.9% vs 33.0%), while other characteristics did not differ. In the GPCare-1 study, the prevalence of caregivers was 12.6%. The majority of them felt that their GP takes their problems seriously (63.6%) without difference by SES. CONCLUSION: Caregivers with low SES constitute an especially high-risk group for psychological strain, requiring special GP attention to support their needs.

High Exhaustion in Geriatric Healthcare Professionals During the COVID-19 Second Lockdown.

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.

Assessment of Have Problems and Care Burdens of Mothers with Handicapped Children in COVID-19 Pandemic.

In the study, it was aimed to evaluate the problems and care burden of mothers who have a handicapped child in the pandemic process. The population of the descriptive study consisted of the mothers of the children who came to the rehabilitation center (n = 230), and the sampling consisted of the mothers who wanted to participate in the study (n = 216). The research data were collected through social media and the data were analyzed using the mean, standard deviation, percentage and frequency measurements, independent sample t test, Oneway anova, Kruskal wallis tests in the SPSS program. In the study, Burden Interview Scale (BIS) scores of the mothers who stated that the educational status of their child was adversely affected in the pandemic, stated that they were worried that there would be someone to take care of my child if I died, stated that the child's health checks were interrupted, stated that they did not send their child to school due to the fear of COVID-19, and reported that they had a problem in reaching the health institution was determined were significantly higher than. Mothers with handicapped children stated that their children experienced difficulties in important situations such as health checks and educations during the pandemic period. In addition, it was found that the care burden of these mothers was higher. During the pandemic period, it is necessary to make and support new regulations in accordance with the disability of these special children with state policies as well as healthcare professionals.

Disrupted Access to Therapies and Impact on Well-Being During the COVID-19 Pandemic for Children With Motor Impairment and Their Caregivers.

OBJECTIVES: The aim of this study was to determine the impact of the COVID-19 pandemic on access to rehabilitation therapies and the impact of changes in therapy access on the physical and mental well-being of children with motor impairment and their caregivers. DESIGN: Caregivers of children younger than 18 yrs with childhood-onset motor impairment (primarily cerebral palsy) completed an anonymous survey through the online platform REDCap between May 5 and July 13, 2020. RESULTS: The survey was completed by 102 participants. Before the pandemic, 92 of 102 children (90%) were receiving one or more therapies; at the time surveyed, 55 children (54%) were receiving any therapies (P < 0.001). More than 40% of the sample reported increased child stress, decreased physical activity, and/or decline in mobility/movement. Participants who reported a decrease in number of therapies at the time surveyed more frequently reported lower satisfaction with treatment delivery (P < 0.001), a decline in child's mobility (P = 0.001), and increased caregiver stress (P = 0.004). Five qualitative themes were identified from open-ended question responses related to therapies and well-being. CONCLUSIONS: Access to pediatric rehabilitation therapies was disrupted during COVID-19. Disrupted access may be related to impact on physical and mental health. With the expansion of telehealth, caregiver and child feedback should be incorporated to optimize benefit.

Supporting families to protect child health: Parenting quality and household needs during the COVID-19 pandemic.

BACKGROUND: Supportive parenting is critical for promoting healthy child development in the face of stressors, such as those occurring during COVID-19. Here, we address a knowledge gap regarding specific household risk factors associated with parenting quality during the pandemic and incorporate first-person accounts of family challenges and needs. METHODS: Mixed methods were applied to data collected between April 14th - 28th, 2020 from the "Parenting During the Pandemic" survey. Participants included 656 primary caregivers (e.g., mothers, fathers, foster parents) of least one child age 1.5-8 years of which 555 (84.6%) responded to at least one parenting questionnaire. Parenting quality was assessed across stressful, negative, and positive parenting dimensions. Household risk was examined across pandemic- linked (e.g., caregiver depression, unmet childcare needs) and stable factors (i.e., annual income, mental illness history). Significant correlates were examined with regressions in Mplus. Thematic analysis identified caregiver challenges and unmet needs from open-ended questions. FINDINGS: Caregiver depression, higher child parity, unmet childcare needs, and relationship distress predicted lower-quality parenting. Caregiver depression was the most significant predictor across every parenting dimension, with analyses indicating medium effect sizes, ds = .39 - .73. Qualitative findings highlighted severe strains on parent capacities including managing psychological distress, limited social supports, and too much unstructured time. INTERPRETATIONS: Lower quality parenting during COVID-19 is associated with multiple household and pandemic risk factors, with caregiver depression consistently linked to parent- child relationship disruptions. Focused efforts are needed to address caregiver mental health to protect child health as part of the pandemic response.

Predictors of mental health among parents of children with cerebral palsy during the COVID-19 pandemic in Iran: A web-based cross-sectional study.

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.

Quality of Life of Informal Caregivers behind the Scene of the COVID-19 Epidemic in Serbia.

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.

Impact of the COVID-19 pandemic on persons with multiple sclerosis: Early findings from a survey on disruptions in care and self-reported outcomes.

OBJECTIVE: To describe the disruptions in care experienced by persons with Multiple Sclerosis in Italy due to the COVID-19 pandemic and the self-reported impact on their health and wellbeing. METHODS: A cross-sectional online survey was completed by 2722 persons with Multiple Sclerosis, after Italy instituted a national lockdown in response to the pandemic. RESULTS: Persons with Multiple Sclerosis reported that the pandemic caused broad disruptions to usual health and social care services, which impacted on their health and wellbeing. Disruptions in care were consistently associated with negative self-reported impacts on the expected progression of the disease, on out-of-pocket expenditure and on carer's stress. Psychological consequences were associated with interruption to usual psychological support, and concerns about the safety of care delivered in person. CONCLUSIONS: The quality of life of persons with Multiple Sclerosis depends greatly on prompt access to a broad range of health and care services. Negative psychological impacts reported by persons with Multiple Sclerosis with less severe disabilities show that accessible integrated services are crucial for maintenance of their wellbeing. Most persons with Multiple Sclerosis with more severe disability experienced negative impacts on perceived health. Their carers compensating for lack of social input resulted in care overburden. As continuity of care is crucial for persons with Multiple Sclerosis, as well as for persons with chronic conditions in general, strategies must be in place to ensure it is included in future pandemic response plans.

Impact of COVID-19 outbreak on mental health and perceived strain among caregivers tending children with special needs.

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.