Search

Developmental disabilities (DDs) that occur in early childhood can have long-lasting effects on an individual's daily functioning. This paper emphasises the need for interventions for children with DDs and their families, as parents of children with DDs may experience high levels of strain and mental health symptoms. However, there is a lack of research on the impact of caregiver burden on Korean parents of children with DDs. Analyses were conducted to examine the mediating effects of mental health symptoms and social participation on the relationship between caregiver burden and quality of life (QoL). The results indicate that caregiver strain has a negative effect on QoL, and parental mental health symptoms and social participation mediate this relationship. The findings provide insights for practitioners in social work and special education involved with Korean parents of children with DDs and highlight the support systems needed to enhance their wellbeing. [ABSTRACT FROM AUTHOR]

Young adult family caregivers (age 18–34) are increasingly providing care to their older family members with chronic, disabling, or other serious health conditions. Little is known on young adult family caregivers and their resilience in the context of family interaction and resources. Utilizing the 2015 National Study of Caregiving (NOSC) data, the aim of this study is to examine the correlation of caregiver strain, with the three elements of Family Resilience model: beliefs, family organizational patterns, and communication processes. The results of the study found that two parameters of NOSC in particular were associated with less caregiver strain: completed trainings and enjoying being with the care recipient. In addition, the parameter "feeling lonely," defined as having a few friends was found significantly associated with higher caregiver strain. The results demonstrated the importance of understanding the unique resilience factors and tailored interventions for young adult family caregivers. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Abstract 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.

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. [ABSTRACT FROM AUTHOR]

The article focuses on redefining the concept of caregiver strain for family caregivers providing end-of-life care in Hong Kong. Topics include the development and validation of a new three-factor model for caregiver strain, the demographic correlates of caregiver strain, and implications for future caregiving interventions tailored to diverse sociodemographic groups.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

• Mediating role of self-care in dementia caregiving research has been underexplored. • Higher caregiver strain was linked to self-care difficulty and health decline. • Self-care difficulty partially mediated caregiver strain–health decline association. 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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Caregiver strain is the adverse impact that parents of children with emotional and behavioral issues including autism often experience (e.g. negative consequences of caregiving such as financial strain and social isolation; negative feelings that are internal to the caregiver such as worry and guilt; and negative feelings directed toward the child such as anger or resentment). This study showed that on average caregiver strain did not significantly change in North American parents of children with autism during a 2-year period. Improved caregiver strain was linked to improved child functioning and behavior. Routine assessment of caregiver strain and referral to evidence-based programming and supports may help alleviate some of the burden that families of children with autism commonly experience.

Abstract 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

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. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. 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. • Question: Is the rate of depression among caregivers associated with certain conditions, or the relationship of the care-recipient? • Findings: There are numerous significant differences in the rates of caregiver depression based on the condition and relation of the care recipient. • Meaning: This variability suggests that there is need for tailoring services to meet the unique needs of subgroups of caregivers. [ABSTRACT FROM AUTHOR]

Parents of children with autism spectrum disorder (ASD) face higher levels of caregiver strain compared to parents of children with other disabilities. This study examined child clinical features that predict high levels of caregiver strain for 374 parents of children with ASD. Caregiver strain was measured using the Caregiver Strain Questionnaire (CGSQ) objective, subjective internalized, and subjective externalized subscales. Confirmatory factor analysis indicated an acceptable fit for the original CGSQ three-factor solution. The strongest child predictors across CGSQ subscales were: disruptive behavior for objective strain, autism severity and disruptive behavior for subjective internalized strain, and oppositional behavior and hyperactivity for subjective externalized strain. Individualized interventions that attend to specific elements of parental strain may reduce strain and improve family wellbeing.

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.

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

BackgroundCaregivers of stroke survivors play a crucial role in post-stroke functional recovery and the prevention of complications. Although the situation is incredibly stressful and intimidating and the caregiver burden is high, there is little evidence in the local Ethiopian context of the extent of the burden among caregivers of stroke survivors. Therefore, the aim of this study was to assess the level of caregiver burden and its associated factors among primary caregivers of stroke survivors in Ethiopia.MethodsA cross-sectional study was conducted in Amhara regional state tertiary hospitals from April to June 2022. A standardized questionnaire was used to record factors associated with caregiver burden, including sociodemographic, clinical, and care situation factors. The Zarit caregiver burden interview (short form) was used to assess the level of caregiver burden. A systematic random sampling method was employed to select the study participants. Multinomial logistic regression was employed to identify the potential factors associated with the level of caregiver burden.ResultsThe overall prevalence burden among primary caregivers of stroke survivors was 67%. 61.1% had a mild to moderate burden, while 5.9% had a severe burden. In multivariable multinomial logistic regression analysis, sex, household income, duration of care, and duration of caregiving hours per day were factors significantly associated with the level of burden among caregivers of stroke survivors.ConclusionsBeing female, having a low household income, caring for more than 3 months, and caring for more than 6 h per day were factors significantly associated with the burdens of the primary caregivers of stroke survivors. It is better: health care providers must recognize and screen for burdens and provide special attention.

Abstract Background Providing long-term home care to older adults with chronic diseases may endanger the physical, mental, social, and spiritual health of caregivers and lead to care strain. Objective This study aimed to assess the relationship of caregiver strain with resilience and hardiness in family caregivers of older adults with chronic disease. Methodology This cross-sectional correlational study was conducted in 2020–2021 in Tehran. Participants were 230 family caregivers randomly recruited from 8 urban health care centers. Data were collected using a personal characteristics questionnaire, the Modified Caregiver Strain Index, Connor-Davidson Resilience Scale, Family Hardiness Index, and the data were analyzed by using SPSS 22 version. Pearson’s correlation coefficient was applied for data analysis. P-values ≤0.05 were considered significant. Results A total of 230 caregivers participated in the study. The mean age of participants was (46.65 ± 13.63) years and most of them were female (73.9%). Mean scores of caregiver strain, resilience, and hardiness in family caregivers were 16.23 ± 4.5, 39.89 ± 10.9, and 31.21 ± 7.79, respectively. Pearson correlation showed a significant and inverse correlation between caregiver strain and resilience (r = -0.310, P = 0.002), and also a significant and inverse relationship between caregiver strain and hardiness (r = -0.276, P = 0.001). Conclusion In this study, family caregivers had moderate caregiver strain, low resilience, and high hardness. Caregiver strain in family caregivers of older adults with chronic disease is an important health issue associated with resilience and hardiness. To promote health, effective adaptation to long-term care, and reduce caregiver strain, designing effective interventions to increase resilience and hardiness in family caregivers seems necessary.

Copyright of Journal of Physical Medicine & Rehabilitation Sciences is the property of Turkiye Klinikleri and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

The aim of the study is to explore the role of child’s executive functions in the relation between child’s externalizing and internalizing problems and caregiver strain in early school age children. The caregiver strain refers to providing nurture and care for a dependent family member. A sample includes 175 caregiver-child dyads and 36 school teachers. Participants completed the Family Strain Index which measures caregiver strain or burden (caregivers), the Strengths and Difficulties Questionnaire which measures child’s externalizing and internalizing problems (teachers), and behavioral tasks that measure executive functions (children). Using structural equation modelling, the analysis resulted in a full mediation of the child’s externalizing problems on the caregiver strain by child’s executive functions. However, the association of child’s internalizing problems with caregiver strain has not been confirmed. These results indicate that better child’s executive functions buffer the negative effect of child’s externalizing problems on caregiver perceived burden. Based on these results, we can suggest that interventions should be focused on programmes to improve the child’s executive functions in the family and educational context, along with caregiver training aimed at providing emotional and social support, or individual therapy. [ABSTRACT FROM AUTHOR]

Caregivers of people with disability experience difficulties in a variety of care domains. Understanding the predictive factors of caregiver strain is important in developing and implementing evidence-based intervention to reduce the difficulties experienced by the carers. The current study is a cross sectional comprehensive one-phase survey conducted in randomly selected sub-districts (taluks) of the Ernakulam district in Kerala. Primary caregivers (n = 851) for persons with different kinds of disability were identified with the help of ASHAs (Accredited Social Health Activities) from the selected geographical locations and were interviewed in a house-to-house survey after obtaining written informed consent. Validated tools measuring caregiver strain, financial burden, access to services and wellbeing were used to study the population. Majority of the caregivers were females (77.3%) and spouses (35.2%). Of the caregivers 27% reported high levels of caregiver strain. The major factors associated with caregiver strain were female gender (B = 1.379, p = 0.000), financial issues (B = 0.105, p = 0.000), the general health of caregivers (B = 0.467, p = 0.000) and issues relating to employment (B = 0.956, p = 0.000) and the availability of government welfare services (B = 1.138, p = 0.000). High caregiver burden and strain is experienced by almost a third of people caring for a person with a disability. Comprehensive interventions to reduce caregiver strain should be developed. The rehabilitation sector needs to be made aware of the high levels of caregiver strain (especially in carers who were female, unemployed, have health issues and lack formal support). To improve wellbeing for people with disability we firstly need to promote social inclusion and support schemes for caregiver. Co-designed systems are needed to assist carers to access formal and informal support resources, and increase social connectedness. [ABSTRACT FROM AUTHOR]

Caregiver strain is associated with caregiver and child well-being and clinical outcomes. The present study examined the psychometric properties of a revised 11-item measure of caregiver strain, the Caregiver Strain Questionnaire–Short Form 11 (CGSQ-SF11). In a sample of 962 caregivers, we found support for a three-factor model of the CGSQ-SF11, consisting of objective (e.g., financial impact), subjective internalized (e.g., sadness about the child's problems), and subjective externalized (e.g., anger directed toward the child) strain factors. Measurement invariance was supported across multiple demographic and clinical groups, and all three subscales displayed high internal consistency. Convergent validity was also supported through positive correlations with measures of child psychopathology symptoms and psychosocial impairment. Moreover, caregiver strain was associated with number of child disorders as well as breadth of child symptoms across both internalizing and externalizing domains. Findings provide initial validation of the CGSQ-SF11 as a comprehensive yet brief measure of caregiver strain. [ABSTRACT FROM AUTHOR]

While existing research indicates that "sandwiched" employees (those with both childcare and eldercare demands) have lower wellbeing than employees with only eldercare demands, there is little understanding how childcare and eldercare demands interact to create those differences. Drawing on two studies, we hypothesize childcare demands amplify the negative impact of eldercare demands on wellbeing. Study 1 operationalizes childcare as a dichotomous variable (i.e., has childcare or not), and examines the relationship between hours per week in eldercare and wellbeing for two groups of employees: those with eldercare and those in the sandwich generation. Study 2, which operationalizes childcare as a continuous variable (i.e., hours in childcare per week), explores how time in childcare moderates the relationship between time in eldercare and wellbeing. Findings show time in eldercare is negatively associated with wellbeing, and the impact of childcare on the relationship between time in eldercare and wellbeing is dependent on how one operationalizes wellbeing and childcare constructs. [ABSTRACT FROM AUTHOR]

Objectives: This study was aimed to estimate the need for palliative care in an urban resettlement colony of Dakshinpuri Extension, New Delhi. Material and Methods: This was a community-based cross-sectional study conducted in New Delhi. We trained four multipurpose workers to screen the households during their routine household-to-household visits. The screening for the need for palliative care was done using three questions -- that is, (1) presence of a bedridden patient or (2) person in need for help in activities of daily living or (3) not able to go for work due to any physical chronic illness. If the answer to any of the three screening questions was yes for any member in a household, then these households were visited by a community physician trained in palliative care and a medical social service officer to confirm the need for palliative care. Patients were administered a semi-structured questionnaire containing the sociodemographic details and an assessment of disease status and review of health records was done. The patient and his/her caregiver were also assessed for awareness regarding palliative care. Results: A total of 2028 households were screened and the need for palliative care was found to be 1.5/1000 population (95% CI: 0.9--2.1). The mean age (SD) of patients who need palliative care was 60 years (SD--12.9). The common diseases which required palliative care were stroke with a focal neurological deficit (45.8%), osteoarthritis with marked dependence (20.8%) and cancer (12.5%). None of the patients was receiving palliative care as patients and their caregivers were not aware of the term palliative care/end of life care/home care for bedridden people/community-based care. Conclusion: The need for palliative care in an urban resettlement colony of North India was found to be 1.1/1000 population. Further studies are required to estimate the need for palliative care in North India. [ABSTRACT FROM AUTHOR]

Objectives: To characterize caregiver experiences in the context of advanced pediatric cancer by identifying individual (i.e., demographic factors, stress) and family context factors (i.e., family roles, social support) associated with caregiver strain., Methods: Families of children (ages 5-25) with advanced cancer (i.e., physician-estimated prognosis < 60%, relapsed/refractory disease) were recruited from a large children's hospital. Mothers ( n = 55; 87% White) and fathers ( n = 30; 83% White) reported on their caregiver strain, cancer-specific stress, general stress, social support, division of 7 family roles (e.g., medical care of ill child, household chores), and their satisfaction with each role., Results: Parents reported moderate caregiver strain, cancer-specific stress, and general stress, and high social support and satisfaction with family roles. Fathers reported family roles were shared equally, whereas mothers reported either sharing roles or completing them independently. When accounting for income and partnership status, greater caregiver strain for mothers was associated with greater general stress, greater satisfaction with family roles, and lower social support. For fathers, greater caregiver strain was associated only with greater cancer-specific stress., Significance of Results: In the context of advanced pediatric cancer, fathers may experience caregiver strain as cancer-specific stress increases, whereas mothers' strain may depend on broader family and social factors. Psychosocial providers should address general and cancer-specific stress within families, and provide resources for enhancing mothers' social support. Additional research is needed with larger, more diverse samples to inform future intervention approaches.

This study examined whether certain demographic characteristics, caregiver strain, and coping behaviors were associated with the mental health outcomes of family caregivers of children with disabilities in Bolivia during the COVID‐19 pandemic. A mixed‐methods convergent study design was used with virtual interviews to quantitatively assess caregivers' demographic characteristics, caregiver strain, coping behaviors, and mental health outcomes, as well as qualitatively assess how the pandemic affected their family. Approximately 32%–71% of caregivers experienced poor mental health outcomes (stress, anxiety, and depression), especially among those experiencing poor health, high caregiver strain, and those using maladaptive coping strategies. Qualitative responses revealed that they experienced several unique stressors during the pandemic that affected them and their children. These findings highlight the need for culturally tailored prevention and treatment interventions to help offset the adverse effects of the COVID‐19 pandemic on the mental health outcomes of this at‐risk population. [ABSTRACT FROM AUTHOR]

BACKGROUND: Individuals who provide care to older adult women with breast cancer can experience distressing caregiver strain. OBJECTIVES: The purpose of this study was to determine whether functional status and depression in older adult women with breast cancer relates to strain in their caregivers. Relationships among caregiver characteristics and strain were also evaluated. METHODS: This multivariate, cross-sectional study used activities of daily living, instrumental activities of daily living, Timed Up and Go Test, Geriatric Depression Scale, and Modified Caregiver Strain Index (MCSI). Statistical analyses included Wilcoxon rank-sum tests and Spearman rank correlations. Logistic regression was used to predict MCSI scores. FINDINGS: Patient Timed Up and Go Test and Geriatric Depression Scale scores had the greatest impact on MCSI, with lower function and greater depression associated with increased caregiver strain. Advanced disease was associated with increased caregiver strain. When cancer stage is controlled for, caregiver employment is associated with increased strain. [ABSTRACT FROM AUTHOR]

Background: Providing long-term home care to older adults with chronic diseases may endanger the physical, mental, social, and spiritual health of caregivers and lead to care strain. Objective: This study aimed to assess the relationship of caregiver strain with resilience and hardiness in family caregivers of older adults with chronic disease. Methodology: This cross-sectional correlational study was conducted in 2020–2021 in Tehran. Participants were 230 family caregivers randomly recruited from 8 urban health care centers. Data were collected using a personal characteristics questionnaire, the Modified Caregiver Strain Index, Connor-Davidson Resilience Scale, Family Hardiness Index, and the data were analyzed by using SPSS 22 version. Pearson's correlation coefficient was applied for data analysis. P-values ≤0.05 were considered significant. Results: A total of 230 caregivers participated in the study. The mean age of participants was (46.65 ± 13.63) years and most of them were female (73.9%). Mean scores of caregiver strain, resilience, and hardiness in family caregivers were 16.23 ± 4.5, 39.89 ± 10.9, and 31.21 ± 7.79, respectively. Pearson correlation showed a significant and inverse correlation between caregiver strain and resilience (r = -0.310, P = 0.002), and also a significant and inverse relationship between caregiver strain and hardiness (r = -0.276, P = 0.001). Conclusion: In this study, family caregivers had moderate caregiver strain, low resilience, and high hardness. Caregiver strain in family caregivers of older adults with chronic disease is an important health issue associated with resilience and hardiness. To promote health, effective adaptation to long-term care, and reduce caregiver strain, designing effective interventions to increase resilience and hardiness in family caregivers seems necessary. [ABSTRACT FROM AUTHOR]

Introduction: This study examined distinct profiles of met and unmet care needs among community-dwelling older adults with cognitive impairment and their association with caregiver strain. Methods: Latent class analysis and multivariable regression were applied to data from 266 caregivers of older Singaporeans, aged 60 years and above, with cognitive impairment. Care needs were evaluated by caregivers using the Camberwell Assessment of Need for the Elderly. Caregiver strain was measured by the Zarit Burden Interview. Results: Four need profiles were identified: (1) no need (38% of caregivers), (2) met social and memory needs (29%), (3) no social and met memory needs (17%), and (4) unmet social and memory needs (16%). The unmet social and memory needs profile was associated with a higher level of caregiver strain, compared to the no need profile. Discussion: A person-centered approach captured heterogeneity in the care needs of community-dwelling older adults with cognitive impairment. Policymakers should develop tailored interventions based on need profiles that may help reduce caregiver strain. [ABSTRACT FROM AUTHOR]

Context: Surrogate decision makers experience significant amounts of anxiety, burden, and strain in their role as caregivers and decision makers for loved ones. Objectives: To investigate longitudinally whether surrogate decision makers engaging in ACP together with their loved one reduces perceived anxiety, burden, and strain felt by surrogate decision makers. Methods: Post-hoc analysis of a randomized controlled trial evaluating caregivers' perceived self-efficacy to serve as surrogate decision makers. The trial employed a 2×2 study design of patient/caregiver dyads who engaged in advance care planning (ACP) using a standard living will form vs "Making Your Wishes Known" (MYWK), and having the patient engage in ACP alone vs together with the family caregiver. Surrogates completed validated survey instruments surveys longitudinally to compare levels of anxiety, burden, and strain. Results: 246 of 285 dyads completed the measures. No significant reductions in anxiety, burden, or strain were found longitudinally in surrogate decision makers using MYWK together with loved one's vs other control groups. Increases in strain and anxiety were seen across all study groups and increases in burden across 2/4 study groups. Strain and burden increased most in the MYWK Together arm (▴ = +2.22 and ▴ = +1.91 respectively). Conclusion: Family caregivers who engaged in ACP together with patients using the decision support tool MYWK did not experience less strain, burden, or anxiety longitudinally compared to other study arms. These results may help inform the design of future studies and interventions that promote caregivers' involvement in ACP interventions. [ABSTRACT FROM AUTHOR]

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. 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. 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. 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. [ABSTRACT FROM AUTHOR]

Atypical sensory processing occurs in up to 97% of children on the autism spectrum. Children who are on the autism spectrum also commonly demonstrate challenging behaviors, and their caregivers report increased levels of strain in daily life. The aim of this study was to explore four sensory processing features; seeking, avoiding, sensitivity, and registration, and their relationships with maladaptive behaviors in children with autism, as well as with caregiver strain. Participants comprised 75 children with autism aged 7–12 years (M = 7.81). Caregivers completed three questionnaire measures examining child sensory processing, maladaptive behaviors, and perceptions of caregiver strain. We found avoiding significantly associated with irritability. Avoiding also displayed the strongest relationship with global caregiver strain. Avoiding and seeking were strongly related to hyperactivity/noncompliance (components of maladaptive behavior). A multiple regression was performed to explore how atypical sensory processing features and maladaptive behaviors together predicted caregiver strain. Together, maladaptive behaviors and sensory features accounted for 58% of the variance in total caregiver strain. The only significant individual predictor of total caregiver strain was sensory avoiding, which uniquely accounted for 5.76% of the variation. The findings suggest that atypical sensory processing is associated with overall caregiver strain, above that explained by maladaptive behaviors. Implications for targeted support for the benefit of the child, parents and family unit are discussed. Lay summary: Children who are on the autism spectrum often have differences in sensory processing. These children also tend to show challenging behaviors, and their caregivers can experience increased stress. This study looked at how sensory processing difficulties relate to such behaviors and caregiver stress. We found that both sensory processing and challenging behaviors were related to the amount of stress caregivers felt. This suggests that interventions may benefit from looking at sensory processing features when considering how to help reduce challenging behaviors and caregiver stress. [ABSTRACT FROM AUTHOR]

Background: Parkinsonism, including Parkinson's disease (PD) are progressive neurological conditions. As these condition progress, individuals will need more support with their care needs to maintain independent community-living. Care needs are mainly met by unpaid, informal caregivers, usually close family members or friends. Caregiver strain is thought to lead to the need for care home placement when the caregiver can no longer cope. Objective: To understand predictors of caregiver strain and its influence on care home placement for people with moderate to advanced Parkinsonism. Methods: This is a convergent mixed methods study. Quantitative data, following an adapted stress-appraisal model, were collected on caregiver profile, tasks performed and causes of caregiver strain. Semi-structured, in-depth interviews were conducted with caregivers of people with PD (PwP) who went into a care home during the study period, to develop a deeper understanding of the caregiver role and the factors influencing caregiver strain. Results: Quantitative data were collected from 115 patient caregiver dyads. Interviews were conducted with 10 caregivers. A model to predict caregiver strain was developed and predictors of caregiver strain were identified, such as functional disability and poor caregiver sleep. Conclusion: Our findings further demonstrate the complexity of carer strain. Particular dimensions are identified that need to be addressed within clinical practice to reduce carer strain and support people with Parkinsonism to remain within their own home for as long as possible. [ABSTRACT FROM AUTHOR]

Background: Caregiver strain or burden is a strain experienced by a person who is taking care of a disabled or chronically ill, and an old age person in the family. Caregivers experience burdens in emotional, physical, psychological, economical, and social aspects of their day-to-day life. Objectives: The objective of the study was to identify and compare caregiver strain experienced by them in physical, physiological, social, emotional, and economic areas and to find the association of caregiver strain with selected demographic variables. Methods: Using convenience sampling technique 247 caregivers were recruited in the selected villages of Tapi District, Gujarat. And after obtaining their consent caregivers were interviewed using the caregiver strain index by Robinson BC. Results: 52% of the samples had mild levels of strain, 40% moderate levels, and eight percent of them with severe levels of strain. The economic strain was the highest (54%) and the physiological strain was the least (13%). Relationship with elderly and ability of an elder person to perform Activities of Daily Living had an influence on caregiver strain. Conclusion: Caregiver burden and its impact need to be explored in detail and measures need to be taken to reduce their burden in physical, economical, and emotional areas. [ABSTRACT FROM AUTHOR]

Purpose: When a child is diagnosed with hearing impairment (HI), it will be stressful for the parents and other family members. They are more likely to experience an extensive range of emotions, which will affect the parentchild dynamics. To prevent or minimize its influence on the HI child, it is crucial to identify these stress factors at the earliest. The primary objective of the study is to use a close-ended questionnaire to assess the major stress factors experienced by Indian mothers of children with HI. Materials and Methods: The 21-item Caregiver Strain Questionnaire (CGSQ) was modified by replacing the emotional/behavioral domain with hearing problems. The CGSQ was administered to 100 caregivers of children with HI in the age range of 4-6 years. A 5-point Likert scale was used to measure the response ranging from "Not at all" to "Very much" a problem. Results: The item rated "Very much" a problem by most of the mothers was the sadness felt as a result of their child's hearing problem. The second most reported stress mothers faced were related to the future of their child. Apart from the stress related to the personal domain, there was a considerable amount of stress related to the financial aspects. Conclusions: The findings from the study highlight the significant stress factors in mothers of HI children, which has important implications in counseling and family-based intervention. [ABSTRACT FROM AUTHOR]

Background: Cancer treatment has been increasingly fulfilled on an outpatient basis by family caregivers. The variety and severity of caregivers' responsibilities expose them to physical and mental risks. Investigating the effect of education and telephone counseling on patient and family outcomes requires performing further studies. Aim: This study aimed to determine the effect of education and telephone counseling on caregiver strain and unmet needs in family caregivers and self-care behaviors in cancer patients. Method: The present randomized controlled trial was conducted on 60 caregivers-cancer patients referred to urban health education clinics in northeastern Iran within 2018-2019. A 20-minute face-to-face training session was held for the caregivers of cancer patients, and seven training pamphlets were given to the caregivers. Moreover, the intervention group received four telephone counseling sessions during three courses of chemotherapy. The strain and unmet needs of caregivers were measured by the Zarit Burden Interview and Supportive Care Needs Survey-Partners and Caregivers questionnaires, respectively. The patient self-care was assessed by the Nail Self-care Diary questionnaire. The data were analyzed by SPSS software (version 16) using an independent t-test and paired t-test. Results: The mean values of caregivers’ age were 38.9±12.7 and 37.7±8.6 years in the intervention and control groups, respectively. The results of the independent t-test showed no statistically significant difference between the two groups (P=0.42). The results also revealed that the mean scores of caregiver strain and unmet needs decreased following the intervention, and the mean scores of self-care behaviors increased in the intervention group after the intervention (P=0.001). Implications for Practice: Education and telephone counseling can simultaneously help to follow up problems, improve self-care behaviors in cancer patients, alleviate the caregiver strain, and meet the needs of family caregivers.

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.

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 ( χ 2 [61, N  < 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.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.

Objectives: Clinical assessment of persons with dementia should include potential causes of behavioral problems, including pain, depression, and caregiver–patient relationship quality. Many validated assessment tools are available; however, a brief screening tool is needed, as administering a battery of instruments is impractical in most clinical settings. We evaluated (a) the construct validity of brief screens for pain, depression, and relationship strain by examining their associations with validated measures and medication use and (b) the predictive validity of each screen and the screens as a set by examining their associations with frequency of disruptive behaviors. Methods: Patient–caregiver dyads (n = 228) in Aggression Prevention Training for Caregivers were examined. Results: There was evidence of good construct validity for each screen. The relationship screen and total number of screens endorsed were significantly associated with frequency of disruptive behaviors. Conclusion: The brief screens show potential for use in clinical practice. [ABSTRACT FROM AUTHOR]

Progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS) progress relentlessly and lead to a need for care. Caregiving is often burdensome. Little is known about the course of caregiver burden (CB) in PSP and CBS patients. Longitudinal analysis of CB in family members caring for PSP and CBS patients. Single-center longitudinal pilot study in 68 newly diagnosed patients with probable PSP and CBS (52 Richardson's syndrome; 1 progressive gait freezing of PSP; 15 CBS). Demographic, educational, occupational parameters, family status, motor functions (UPDRSIII, Hoehn and Yahr Score, Tinetti) and neuropsychological performance (CERAD Plus, Frontal Assessment Battery) were assessed, as well as behavioral and neuropsychiatric impairments (Frontal Behavioral Inventory, Neuropsychiatric Inventory), activities of daily living (ADL) and caregiver burden using the Caregiver Strain Index (CSI), in most patients also the Zarit Burden Interview (ZBI). Patients were followed up every 6 months for up to 2 years. Caregivers reported mild to moderate CB at baseline, which increased by 25–30% in 2 years and was significantly greater in PSP than in CBS. Risk for mental health problems increased over time, especially in female caregivers (depression). Important patient-related factors were apathy, aspontaneity, depression, irritability, disorganization, poor judgment, impairment of language, impairments in ADL, a high educational level of the patient and close family relationship. Behavioral symptoms and impaired ADL are the main patient-related factors of CB in PSP and CBS. CB can be severe and needs to be assessed repeatedly from the time of diagnosis to provide comprehensive support. [ABSTRACT FROM AUTHOR]

ObjectiveThis study examines the associations of childhood attention-deficit/hyperactivity disorder (ADHD) risk status with subsequent parental social network characteristics and caregiver strain in adolescence; and examines predictors of adolescent mental health service use.MethodsBaseline ADHD screening identified children at high risk (n = 207) and low risk (n = 167) for ADHD. At eight-year follow-up, parents reported their social network characteristics, caregiver strain, adolescents' psychopathology and mental health service utilization, whereas adolescents self-reported their emotional status and ADHD stigma perceptions. Analyses were conducted using ANOVAs and nested logistic regression modeling.ResultsParents of youth with childhood ADHD reported support networks consisting of fewer spouses but more healthcare professionals, and lower levels of support than control parents. Caregiver strain increased with adolescent age and psychopathology. Increased parental network support, youth ADHD symptoms, and caregiver strain, but lower youth stigma perceptions were independently associated with increased service use.ConclusionsRaising children with ADHD appears to significantly impact parental social network experiences. Reduced spousal support and overall lower network support levels may contribute to high caregiver strain commonly reported among parents of ADHD youth. Parental social network experiences influence adolescent ADHD service use. With advances in social networking technology, further research is needed to elucidate ways to enhance caregiver support during ADHD care.