Caregiver strain among relatives of out-of-hospital cardiac arrest survivors; the DANCAS relative survey.

BACKGROUND: Knowledge about caregiver strain among relatives of out-of-hospital cardiac arrest (OHCA) survivors is limited. Thus, the objectives were to i) describe differences in self-reported mental well-being, mental health, and caregiver strain at different time points (1-5 years) post-OHCA and ii) investigate characteristics associated with caregiver strain. METHODS: A national cross-sectional survey (DANCAS) from October 2020 to March 2021 with OHCA survivors and their closest relatives. The relative survey included the WHO-5 Well-being Index (WHO-5), the Hospital Anxiety and Depression Scale (HADS) and the Modified Caregiver Strain Index (M-CSI). Differences in scores between time groups were explored using descriptive statistics. Associations between characteristics and caregiver strain were investigated with multivariable logistic regression models, presented as odds ratios (OR) with 95% confidence intervals (CI), adjusted for gender, age, education status, relative affiliation, and time after OHCA. RESULTS: Of 561 relatives, 24% (n = 137) experienced caregiver strain, with no significant differences in the relatives' mental well-being, mental health, or caregiver strain with time since OHCA. In the adjusted analyses, older age (OR 0.98 95% CI 0.96;0.99) and several self-reported outcomes, including reduced mental well-being (WHO-5 OR 7.27 95% CI 4.86;11.52), symptoms of anxiety (HADS-A OR 6.01 95% CI 3.89;9.29) and depression (HADS-D OR 15.03 95% CI 7.33;30.80) were significantly associated with worse caregiver strain. CONCLUSION: Nearly one-quarter of relatives of OHCA survivors experience caregiver strain, with this proportion remaining unchanged with time. Several outcomes were associated with caregiver strain, emphasising the need to identify relatives at greater risk of burden following OHCA.

Validation of a German version of the caregiver strain questionnaire-short form 11 (CGSQ-SF11).

OBJECTIVE: Caring for a child, particularly one with special healthcare needs, is a demanding task that can lead to the experience of caregiver strain. This in turn has an effect on the caregiver's mental health, as well as on the child and his or her treatment. To enable the identification of afflicted parents, this study aims to provide a German version of the Caregiver Strain Questionnaire-Short Form 11 (CGSQ-SF11) and to examine its factor structure and psychometric properties. METHODS: Data from 698 caregivers were included in the analyses. Caregivers completed the CGSQ-SF11 along with measures of parenting stress (PSI-SF), stress (PSS-10), anxiety (GAD-7), depression (PHQ-8), family-related quality of life (FLQ), and social desirability (SES-17) as additional instruments for validation. A two-week follow-up questionnaire included only the CGSQ-SF11. Exploratory factor analysis followed by a confirmatory factor analysis was conducted for parents of children with and without special healthcare needs, separately. Further analyses examined the validity and reliability of the instrument. RESULTS: For parents of children with special healthcare needs, a three-factor structure (objective, internalized subjective, externalized subjective strain) with a second-order factor (caregiver strain) was supported. For parents of children without special healthcare needs, a similar three-factor structure was found, although the second-order factor was not supported. Measurement invariance between the two groups was not confirmed. Internal consistency, test-retest reliability, and validity were largely supported in both groups. CONCLUSIONS: The results indicate that the German version of the CGSQ SF-11 is a valid and reliable questionnaire for measuring caregiver strain.

A mediating role of self-care difficulty in the association between caregiver strain and the impact of caregiving on health: A cross-sectional secondary analysis.

Caregivers of people living with dementia face strain, reduced self-care, and poorer health status. However, research examining the links among those outcomes is limited. We explored the association between caregiver strain and the impact of caregiving on health status and identified the mediating role of self-care difficulty in this association. In the national caregiving dataset "Caregiving in the U.S. 2020," we included 312 caregivers in this study. Demographics, caregiving characteristics, a composite scale for caregiver strain, and single-item questions for the impact of caregiving on health status and self-care difficulty were used. Descriptive statistics and mediation analysis were conducted. Results revealed that higher caregiver strain was associated with higher self-care difficulty (OR 2.054, p < .001) and negative health changes due to caregiving (OR 2.719, p < .001). Self-care difficulty partially mediated this association. These results indicated the need to explore interventions or resources to offer caregivers to encourage their self-care awareness and activities.

Relationship between Depressive Symptoms, Caregiver Strain, and Social Support with Dementia Grief in Family Caregivers.

Background and Objectives: Dementia grief in family caregivers of people with dementia refers to grieving prior to the death of the care recipient. It is related to psychosocial risk factors that may have a negative impact on the health of these family caregivers. This study aimed to describe the relationship between depressive symptoms, caregiver strain, and social support with dementia grief in family caregivers of people with dementia. Materials and Methods: A descriptive correlational cross-sectional study was conducted. A total of 250 family caregivers of people with dementia participated. Dementia grief was the main variable, and depressive symptoms, caregiver strain, and social support were assessed. Additionally, socio-demographic data were collected. Descriptive statistics were calculated, and a bivariate correlation analysis and a multiple linear regression analysis were performed for dementia grief. Results: Higher scores for dementia grief were found in women, in family caregivers of patients at advanced stages of dementia, and in family caregivers with a low level of education. High levels of depressive symptoms and caregiver strain and low levels of social support indicated greater intensity of dementia grief. Depressive symptomatology was the variable with the greatest influence on dementia grief. Caregiver strain and social support also related to dementia grief, but to a lesser extent. Conclusions: In family caregivers, depressive symptoms, caregiver strain, and social support are related to the intensity of dementia grief, with a greater influence of depressive symptoms. Moreover, being female, having a low level of education, and caring for a care recipient at an advanced stage of dementia are factors associated with increased dementia grief. Concerning study limitations, the sample was restricted, belonging to a specific region of Spain and to a Provincial Federation of associations. It is necessary to exercise caution in generalizing results due to the sociodemographic and geographical characteristics of the sample.

Patient- and caregiver-related factors affecting family caregiver burden of urologic cancer patients.

OBJECTIVE: This study aimed to investigate the level of family caregivers' (FC) burden and the extent to which patient- and caregiver-related factors influence the caregiving burden among FCs of urologic cancer (UC) patients. METHOD: A cross-sectional survey was conducted on caregivers of UC patients who sought cancer care. The modified caregiver strain index (MCSI) was used to assess FC burden. RESULTS: Just over half (54.3%) of FCs had moderate/high MCSI scores (score 9-26). By demographics, FCs who were unemployed (OR = 5.55, 95%CI 1.50-20.60) and perceived their current health condition as moderate/poor (OR = 6.05, 95%CI 1.95-18.78) reported higher odds of increased FC burden. Patient performance status played a pivotal role in exacerbating FC burden, whereby the odds of higher FC burden was 13 times higher in caregivers of UC patients having an Eastern Cooperative Oncology Group (ECOG) performance rating score of 3-4 (OR = 13.06, 95%CI 1.44-111.26) than those with a score of 0. Perceived lower levels of confidence in care provision were significantly associated with a higher level of strain (OR = 6.76, 985%CI 1.02-44.90). CONCLUSION: Care recipient performance status was a strong patient-related factor associated with higher FC burden regardless of duration of caregiving and other caregiver-related factors after adjusting for caregiver demographics.

Factor structure, internal consistency, and construct validity of the Caregiver strain questionnaire in Latinx families.

Caregiver strain or stress directly related to caring for a youth with emotional and/or behavioral problems may be an important and understudied cultural factor associated with mental health disparities among Latinx families. Caregiver strain is a highly relevant construct for research questions focused on the identification of youth's mental health needs, family-level impacts of youth mental health problems, and utilization of youth mental health services. Unfortunately, there is a dearth of research on measures of caregiver strain and the psychometric properties of existing measures in Latinx samples. This study examined the structural and construct validity of the English version of the Caregiver Strain Questionnaire (CGSQ) with a sample of United States-based Latinx caregivers of youths ages 6-18 (N = 598). Confirmatory factor analysis showed that the original three-factor model of caregiver strain was evidenced in this sample. Internal consistency analyses and a poor factor loading led to the elimination of one item. The factor structure held after item removal. Significant associations between each dimension of caregiver strain with youth internalizing/externalizing symptom severity and utilization of youth mental health services provided evidence of construct validity (i.e., psychological counseling, telepsychology, parenting classes). Results provide important evidence of the psychometric properties of the English CGSQ in a Latinx sample and support its use in future research aimed at unpacking mental health disparities among Latinx youth and families. Researchers should translate and validate the CGSQ in Spanish to increase the utility of this measure for research with Latinx families.

Optimizing geriatric palliative care in Egypt: Comprehensive patient and family perspectives.

OBJECTIVES: In Egypt, palliative care for geriatric patients is understudied, necessitating exploration for service optimization. Amidst rising chronic illnesses and aging, understanding perspectives of geriatric patients and families is crucial for targeted improvements. This study aims to explore geriatric patients' and their families' perspectives on palliative care in Egypt, seeking opportunities to optimize service delivery for the elderly. METHODS: Employing a cross-sectional design with 110 geriatric patients and an equal number of family caregivers from the Damietta Oncology Institute and the pain treatment clinics for cancer patients at Zagazig University Hospital, the study focuses on a specialized pain clinic. Validated tools (Palliative Care Outcome Scale, Family Satisfaction with End-of-Life Care [FAMCARE] Scale, Edmonton Symptom Assessment System [ESAS], Caregiver Strain Index [CSI]) assess quality of life, family satisfaction, symptom severity, and caregiver strain. RESULTS: Geriatric patients (mean age: 65.0 ± 8.1 years; 45.5% male, 55.5% female) have diverse diagnoses (e.g., breast cancer 22%). Palliative care outcomes reveal challenges: low emotional well-being (2.6 ± 0.0) and alarming overall quality of life (1.8 ± 0.0). Family dissatisfaction (FAMCARE) is pervasive (total mean score 2.6 ± 0.5). Symptom severity (ESAS) is high, and caregiver strain (CSI) is notable (8.5 ± 2.2). SIGNIFICANCE OF THE RESULTS: The findings underscore the significance of the challenges faced by geriatric patients and caregivers in palliative care. Patients confront considerable symptom burdens and emotional distress, while caregivers experience notable strain. Urgently needed are targeted interventions designed to enhance patient well-being, alleviate caregiver burden, and elevate satisfaction. The critical importance of implementing these interventions promptly is highlighted, as they are instrumental in improving the overall care experience for geriatric patients and their caregivers. Moreover, the results underscore the imperative of developing comprehensive support mechanisms to address the intricate dimensions of palliative care, ultimately contributing to a more compassionate and effective care continuum.

Associations Among Autism Symptom Domains and Facets of Caregiver Strain.

Parents of children with autism spectrum disorder (ASD) often experience elevated levels of caregiver strain (CGS). Few studies have examined the relationship between core ASD symptoms and each facet of CGS: objective, subjective internalized, and subjective externalized strain. The predictive effect of core and associated features of ASD on CGS facets were investigated, while also exploring the moderating effect of age. Atypical behaviors and behavior problems were the strongest predictors of all types of caregiver strain. For younger children, more repetitive behaviors predicted higher externalized strain, yet the opposite was true for parents of adolescents. Given that caregiver strain impacts parents' service utilization patterns, future research should focus on strategies to support parents in reducing caregiver strain.

Caregiver strain among patients of palliative care in Sri Lanka: validation of modified caregiver strain index - Sinhala version.

BACKGROUND: Care givers of Palliated patients are at risk of adverse physical, psychosocial and emotional sequelae in varied nature. Efficient and valid assessment tools facilitate early detection to take corrective measures. The Modified Caregiver Strain Index (MCSI), composed of domains associated with caregiver strain is a simple and brief tool that can be used in both clinical and field settings. This study aimed to adapt and validate this in order to cater effective palliative care services in Sri Lanka. METHODS: After cross-cultural adaptation, 200 primary caregivers in 3 teaching hospitals were recruited. The internal consistency, item-total correlations, of the 13-item S-MCSI were performed. The criterion validity was assessed by Pearson correlation between the total scores of S-MCSI, the Karnofky Performance Scale and the Barthel index. Construct validity was determined by the principal component analysis keeping the Varimax with Keiser normalization as the rotation method. The Kaiser-Meyer-Olkin test (KMO) and Bartlett's test of sphericity statistics were also performed to determine the adequacy of the sample and correlations between items, respectively. The number of factors was determined by the Scree plot, percentage of variance explained by each component and number of Eigen values over 01 (Kaiser-Guttman rule). RESULTS: The total MCSI score ranged 0 to 26. The overall Cronbach's alpha of the 13-item questionnaire was 0.80 while item-total corrections ranged 0.34 to 0.62, exception of one item (0.11). Inverse correlations were demonstrated in total scores of MCSI and Karnofky Performance Scale (r =- 0.32, p < 0.001) and Barthel index (r =-0.34, P < 0.001). A Kaiser-Meyer-Olkin value of 0.79 (p < 0.001) for Bartlett's test indicated adequate sampling and nonlinearity of factors. The Scree plot showed a three-factor structure explaining 57% of the variation. Items regarding personal wellbeing of caregiver loaded together while the effects on the family loaded separately. Adjustment of personal concerns and family issues along with time alteration grouped as the third factor. CONCLUSIONS: The study showed that the Sinhala version of MCSI has adequate psychometric properties and reliability to be used as a validated tool to estimate the caregiver burden within a short time period for any health care workers.

Prevalence of depression among caregivers based on the condition and relationship of care recipient.

BACKGROUND: Caregiver distress is the strain experienced by individuals providing care for people with chronic conditions which limit their self-sufficiency for tasks of daily living. Over 1 in 5 Americans are caregivers-a number expected to increase with an aging population. METHODS: We performed a cross-sectional analysis using the 2021 Behavioral Risk Factor Surveillance System (BRFSS) conducted by the Centers for Disease Control and Prevention (CDC) to determine rates of depressive disorders among caregivers and associations between demographic and relational aspects of the care recipient. RESULTS: The included sample size for analysis was 32,676, representing 17,274,935 US caregivers. We found that caregivers who were female, American Indian/Alaskan Native, race-not-listed, earning less than $15,000 a year, or did not complete high school, had higher rates of depression diagnosis. The rates of depression were higher among caregivers if the recipient had a mental or chronic respiratory condition, or if the recipient was their live-in partner. Rates of depression were lower for caregivers of their mother-in-law or spouse. LIMITATIONS: Results were based on self-reported survey data, which are susceptible to social desirability bias. Diagnoses of depression may also be over or under reported across several demographic variables, which may confound results. CONCLUSION: Our findings add to previous research showing that specific groups of caregivers are at higher risk for caregiver stress. Future qualitative research may elucidate underlying causes of depression among caregivers. Analysis into the risk factors for depression among caregivers is vital in providing effective therapeutic options for the caregiver.

Sexual and Gender Minority Differences in Likelihood of Being a Caregiver and Levels of Caregiver Strain in a Sample of Older Adults.

Over the next two decades, the number of caregivers is expected to climb dramatically alongside a rise in older adults, particularly sexual and gender minority (SGM) older adults, yet little research has assessed differences between SGM and non-SGM care partners. Data for these analyses come from the Columbus Healthy Aging Project (N = 79). This study was designed to assess several domains of health among adults aged ≥50 years in Columbus, Ohio, US. Multivariable regression models were used to examine the likelihood of being a care partner, the SGM identity of the primary care recipient, and caregiver strain. In our sample, 227 (28.6%) participants self-identified as care partners for at least one individual. Compared to heterosexuals, gay/lesbian (aOR = 8.38; 95% CI: 5.29, 13.29) participants were more likely to be care partners but did not experience elevated caregiver strain. Bisexual individuals (aIRR = 1.70, 95% CI: 1.11, 2.61) reported greater caregiver strain, while those identifying as a different sexual identity reported lower caregiver strain (aIRR = 0.46, 95% CI: 0.23, 0.96). In turn, caregiver strain was reduced significantly when the care recipient identified as a member of the SGM community (aIRR = 0.67: 95% CI: 0.55, 0.80). These results suggest that SGM care partners may be at risk of unique stressors which may contribute to extant health disparities.

Psychometric Properties of the Caregiver Strain Questionnaire in a Chinese Sample of Caregivers of Children with Autism Spectrum Disorder.

The Caregiver Strain Questionnaire assesses the three dimensions of caregiver strain, namely the objective, subjective externalized and subjective internalized strain. It was validated among caregivers of children with Autism Spectrum Disorder (ASD) in the United States and Mainland China with promising psychometric properties.This study aimed to develop and validate the Chinese (traditional script) version of the Caregiver Strain Questionnaire (C-CGSQ) among 198 caregivers of children with ASD in Hong Kong. The C-CGSQ showed excellent internal consistency (α = 0.958) and test-retest reliability (Spearman's r = 0.966). Concurrent, convergent, divergent validity and a three-factor structure (consistent with previous studies) were established. The C-CGSQ demonstrated promising psychometric properties in measuring caregiver strain among caregivers of Chinese ASD children in Hong Kong.

Redefining caregiver strain for family caregivers in end-of-life care in Hong Kong.

OBJECTIVES: Caregiving for family members at their end of life is stressful. Caregivers' strain, burden, or stress has been measured in various geographical and sociodemographic contexts. The concept of stress, burden, and strain are sometimes used interchangeably. By analysing the factor structure of the Chinese version of the Modified Caregiver Strain Index (C-M-CSI), this study aimed to examine the caregiving strain concept and its demographic correlates. METHODS: A sample of 453 family caregivers of patients with a terminal illness in Hong Kong was employed. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were performed. In addition, generalized linear models (GLM) were used to examine the demographic correlates. RESULTS: The EFA yielded a 3-factor model termed "Perception of Caregiving," "Empathetic Strain," and "Adjustment Demand." This 3-factor model explained 50% of the variance and showed good internal consistency. The CFA confirmed the 3-factor construct with satisfactory internal reliability (χ2 [61, N = 226] = 108.86, p < 0.001, CFI = 0.96, TLI = 0.95, SRMR = 0.04, and RMSEA = 0.06). Inspired by this factor structure and concepts of stress and strain from engineering discipline, a new model of caregiver strain is proposed. Additionally, family caregivers of non-cancer patients, who were not living with the patient, or younger were associated negatively with different dimensions of caregiver strain. SIGNIFICANCE OF RESULTS: The results gave insights into the advancement of the conceptualization of caregiver strain, its multidimensional nature, and process of change, which inform directions for future research and practices.

Effect of Self-Chosen Music in Alleviating the Burden on Family Caregivers of Patients with Advanced Cancer: A Randomised Controlled Trial.

The experience of caregiver burden among family members of patients with advanced cancer is a common problem. The aim of this study was to determine whether the burden may be alleviated by means of a therapeutic approach based on self-chosen music. This randomised controlled trial (ClinicalTrials.gov, NCT04052074. Registered 9 August 2019) included 82 family caregivers of patients receiving home palliative care for advanced cancer. The intervention group (n = 41) listened to pre-recorded, self-chosen music for 30 min/day for seven consecutive days, while the control group (n = 41) listened to a recording of basic therapeutic education at the same frequency. The degree of burden was assessed by the Caregiver Strain Index (CSI), calculated before and after the seven-day intervention. According to this measure, caregiver burden fell significantly in the intervention group (CSI change: -0.56, SD 2.16) but increased in the control group (CSI change: +0.68, SD 1.47), with a significant group x moment interaction F(1, 80) = 9.30, p = 0.003, η2p = 0.11. These results suggest that, in the short term at least, the use of therapy based on self-chosen music alleviates the burden on family caregivers of palliative cancer patients. Moreover, this therapy is easy to administer at home and does not present any problems in practice.

Neurological update: the palliative care landscape for atypical parkinsonian syndromes.

Atypical parkinsonian syndromes are neurodegenerative conditions, characterised by rapid disease progression and shorter life expectancy compared to idiopathic Parkinson's disease. These conditions inflict substantial physical and psychosocial burden on patients and their families; hence, there is a clear rationale for a palliative care approach from diagnosis. An interdisciplinary care model has been shown to improve symptom burden, quality of life and engagement with advance care planning, in a heterogeneous group of neurodegenerative conditions. In this update, we summarise how the landscape for treating these patients has changed and the questions that still need to be resolved.

Association of caregiver strain with the trajectory of quality of life in Parkinson's disease.

We aimed to identify caregiver characteristics associated with the trajectory of quality of life (QoL) in Parkinson's disease (PD). We fit a growth mixture model to longitudinal data from the Parkinson Foundation Parkinson's Outcomes Project (POP) to identify the heterogeneity of QOL trajectories in PD. We then used multinomial logistic regression to model baseline factors that predicted class membership. Baseline growth models were fit to QOL scores measured over 4 disease duration time points. A random intercept and slope model was determined to best fit the data. Next, growth mixture models (1, 2, 3, 4, and 5-class) were fit with covariates (Hoehn & Yahr, sex, and depression) and a three-class model was found to provide the best fit. Class 1 (problematic class (10.0%)) represented individuals with poor QOL at baseline and minor improvement over time. Class 2 (moderate class (32.6%)) represented individuals with moderate QOL at baseline with slight worsening over time. Class 3 (favorable class (56.9%)) represented individuals with good QOL at baseline and slight worsening over time. Multinomial regression revealed that lower caregiver strain, better mobility, and better verbal fluency at baseline predicted membership in the favorable compared to the moderate class. Worse mobility and younger age predicted membership in the problematic compared to the moderate class. While previous studies have reported on the association between mobility and cognition, the novel finding of an association between caregiver strain and PD QOL trajectory suggests caregiver strain is important to measure and address in future research and practice.

Finding Benefit and Feeling Strain in Parenting a Child with Autism Spectrum Disorder.

Female caregivers of children with autism spectrum disorder (ASD) often report higher levels of psychological distress related to increased levels of caregiver strain, as well as frequency and severity of child problem behaviors (CPB). However, despite reported distress, caregivers have also reported benefits. A sample of n = 259 female caregivers of children with ASD completed online surveys assessing CPB, caregiver strain, psychological distress, and benefit finding. Results suggest that objective caregiver strain is a significant mediator between CPB and caregiver distress. Benefit finding, however, was not found to be a significant moderator. These findings inform theoretical applications and provide implications for future research in the development of interventions to enhance functioning in female caregivers.

Effect of Children's Autism Spectrum Disorder Severity on Family Strain and Sleep Quality: A Cross-Sectional Online Survey in the U.S.

To better understand the impact of children's autism spectrum disorder (ASD) severity on families, we evaluated pathways through which ASD severity affected child sleep quality, caregiver strain, and caregiver sleep quality. In a cross-sectional analysis through the U.S.-wide Simons Foundation Powering Autism Research for Knowledge (SPARK) cohort. Participants were caregivers of dependents with ASD aged 3-17 years (N = 3150). We found that increased severity strongly affects caregiver strain and child sleep quality. Child sleep quality was a minor mediator of increasing caregiver strain. Caregiver sleep quality depended on ASD severity only through child sleep quality and caregiver strain. Interventions aimed at improving child sleep quality or reducing caregiver strain could positively impact families of children with ASD.

Repercussions of Caregiving on Caregivers of Stroke Survivors: A Cross-Sectional Study.

BACKGROUND: Stroke is one of the most common causes of disability. Stroke survivors may have a wide variety of sensorimotor, cognitive, perceptual, and behavioral dysfunctions. The majority of long-term care for stroke survivors in residential settings is provided by informal caregivers, such as family members. This study was conducted to assess the burden of caregiving on caregivers of stroke survivors. MATERIALS AND METHODS: This cross-sectional study was conducted by the Department of Physical Medicine and Rehabilitation in a tertiary care institute in Western India. Patients were evaluated for inclusion and exclusion criteria. Caregiver strain among caregivers was assessed using the Modified Caregiver Strain Index Questionnaire (MCSI). The Katz index was used to assess activities of daily living. RESULTS: The inclusion and exclusion criteria were fulfilled by 125 primary caregivers of stroke patients. Among stroke survivors, the majority were male (57.6%), and caregivers were wives of stroke survivors (28.8%). There was a significant statistical difference in the median of the modified caregiver strain index when the stroke survivor was male (p=0.034), fully dependent (p<0.001), and had a hemorrhagic stroke (p<0.001). There was no significant statistical difference in the median of the MCSI based on the sex of caregivers (p=0.928). There was a positive correlation between the age of the patient and MCSI (r=0.373, p<0.001). No correlation was found between the MCSI and age of caregivers (r=-0.108, p=0.230) and duration of stroke (r=-0.089, p=0.321). CONCLUSION: The findings in our study provide evidence that caregivers of stroke survivors experience significant levels of strain. It is desirable to recognize caregiver strain during the rehabilitation of stroke survivors and manage it appropriately.