Burden in family caregivers: The psychometric properties of Polish version of the Zarit Burden Interview. / Poczucie obciazenia opieka wsród opiekunów rodzinnych: psychometryczne wlasciwosci polskiej wersji Zarit Burden Interview.

OBJECTIVES: The aim of the study was to estimate the reliability, validity and internal structure of the Polish version of the Zarit Burden Interview scale (ZBI). METHODS: The participants in the study were 504 Polish family caregivers (spouses, parents, children and other family members) of chronically ill patients. The Burnout Scale version for caregivers (SWS) and the Resilience Assessment Questionnaire (KOP-26) were used. RESULTS: The Polish version of the Zarit Burden Interview demonstrated good psychometric properties. Confirmative factor analysis confirmed the presence of a three-factor second-order structure, the model proved to be quite well suited to the data (CFI = 0.941; TLI = 0.931; SRMR = 0.045; RMSEA = 0.061). Also, the results of the theoretical validity analysis proved to be satisfactory. Cronbach's α coefficient for the general result was 0.91; for individual subscales: "Negative image of the patient" - 0.85, "Frustration" - 0.82 and "Losses" - 0.85. CONCLUSIONS: The Polish version of the ZBI scale can be used as a reliable and accurate diagnostic tool to measure the burden among carers of chronically ill people. Qualitative analysis of the response content also allows to identify areas requiring the implementation of activities in the field of psychological support for the surveyed caregivers.

A cross-sectional study: caregiver burden and related determinants of adult patients with ß-thalassemia major in mainland China.

BACKGROUND: The informal caregivers of adult patients with ß-thalassemia major (ß-TM) bear not only physical but also emotional and economic pressures of providing care. This study is the first to evaluate the caregiver burden by Zarit Burden Interview (ZBI) of adult patients with ß-TM in mainland China and to identify predictors of caregiver burden. METHODS: In this cross-sectional study, we conducted an online survey with snowball sampling covering seven provinces between September 1, 2021, and January 31, 2022, of patients aged ≥ 18 years with ß-TM and their informal caregivers. Caregiver burden was assessed using the ZBI. Data on patient demographics, disease and therapy characteristics, and informal caregivers' demographic characteristics were collected and analysed using independent t-tests, analysis of variance, Spearman's correlation and multiple linear regression. RESULTS: Of 75 included patients, more than half (50.7%) were male. The mean patient age was 24.69 ± 5.59 years. The mean age of the informal caregivers was 50.60 ± 9.16 years, with women (74.7%) being predominant. The ZBI score was 38.00 ± 17.02. Multiple linear regression analysis showed that patients with interrupted blood transfusion therapy and informal caregivers required to care of others were positively associated with caregiver burden (p < 0.05). Age of informal caregivers were borderline significant positively associated with caregiver burden (p < 0.1). Married informal caregivers were negatively associated with caregiver burden (p < 0.05). CONCLUSIONS: The informal caregivers of adult patients with ß-TM in mainland China experienced a moderate-to-severe level of caregiving burden. The caregiver burden was higher in patients with a history of interrupted blood transfusion therapy or in informal caregivers who were older or needed to care for others. Additionally, married informal caregivers experienced lower burdens compared to non-married informal caregivers. These findings provide a reference to identify informal caregivers with higher burdens among patients with ß-TM.

Assessment of Burden in Caregivers of Patients Undergoing Hemodialysis and Peritoneal Dialysis: A Cross-Sectional Study in Riyadh, Saudi Arabia.

A caregiver attends to the needs or concerns of someone limited by disease, injury, or disability to enhance the patient's quality of life, which can be assessed in three areas: social, physical, and psychological. This cross-sectional study assessed the extent of burden experienced by the caregivers of patients undergoing hemodialysis (HD) and peritoneal dialysis (PD) therapy in King Fahad Medical City in Riyadh, Saudi Arabia. The Zarit Burden Interview Arabic Abridged version (ZBI-A) was used to assess the level of burden experienced by caregivers. The data was collected and examined by professionals using the SPSS version 23. Based on the data of 50 participants, a mean ZBI-12 score of 12.22 ± 7.2 was reported. According to the ZBI scale, "No to mild burden," "Mild to moderate burden," and "High burden" were reported as 46% (n = 23), 38% (n = 19), and 16% (n = 8) of participants, respectively. The internal consistency of the ZBI-12 scale, assessed using Cronbach's alpha, was 0.664, indicating a satisfactory level of internal consistency. It was determined that caregivers of individuals undergoing PD and HD encounter different degrees of burden, with a significant proportion of caregivers experiencing a substantial burden.

Caregiver Burnout in Pediatric Laryngomalacia: The Role of Clinical and Psychological Factors.

INTRODUCTION: This study aims to assess caregiver burnout in relation to children diagnosed with laryngomalacia and identify factors influencing burnout levels. MATERIALS AND METHODS: A cohort of 101 caregivers of children with laryngomalacia was studied. Burnout was assessed using the Zarit burden interview (ZBI), while the Hamilton anxiety and Hamilton depression scales were employed to gauge psychological distress. The relationship between burnout and variables like the severity of laryngomalacia, the presence of comorbidities, the child's age, and caregiver demographics was examined using statistical tools in SPSS Statistics version 28.0 (IBM Corp., Armonk, NY, USA). RESULTS: Caregiver burnout decreased as the child's age increased. A direct correlation was observed between the severity of laryngomalacia and caregiver burnout. The presence of comorbidities in children increased caregiver burnout. Moreover, caregivers with increased levels of depression and anxiety exhibited higher burnout levels. No significant correlation was found between caregiver burnout and socioeconomic status or educational level. CONCLUSION: The severity of laryngomalacia, the child's age, the presence of comorbidities, and caregivers' psychological health are significant influencers of caregiver burnout. Healthcare professionals should offer targeted support to caregivers, addressing both their physical and psychological needs.

Caregiver burden among caregivers of children with autism spectrum disorder.

Background: Autism spectrum disorder (ASD) is a neurodevelopmental disorder with deficits in social communication and interaction, restricted and repetitive patterns of behaviour, interests and activities. Autism spectrum disorder is associated with multiple comorbidities. As a result, caregivers of children with ASD experience increased levels of burden and poor quality of life. However, there is a paucity of information on the burden. Aim: The study aimed to describe the sociodemographic profiles and determine the extent of the burden experienced by caregivers of children and adolescents with ASD. Setting: The Child, Adolescent and Family Unit (CAFU) outpatient services at Charlotte Maxeke Johannesburg Academic Hospital (CMJAH). Methods: A quantitative, descriptive, cross-sectional study was done. Two self-administered questionnaires were used: a sociodemographic questionnaire and the 12-item Zarit Burden Interview questionnaire. Results: The questionnaires were completed by 77 caregivers, of which the majority were female (n = 56 or 72.3%), mothers to children with ASD (n = 49 or 64.3%) and identified as Christian (p < 0.001). Most had completed secondary school or had a tertiary education (p = 0.003) and were employed (p < 0.001). Among the caregivers, 41.6% experienced mild to moderate burden, 33.8% experienced high burden and only 24.9% reported no to mild burden. Conclusion: Caregivers of children and adolescents with a diagnosis of ASD are mostly mothers and experience mild to moderate levels of caregiver burden, suggesting the need for improved screening and psychosocial support programmes. Contribution: This study highlights the burden experienced by primary caregivers of children with ASD and is one of the few comprehensive studies on this issue within the context of South Africa.

Burden of Care of Family Caregivers for People Diagnosed with Serious Mental Disorders in a Rural Health District in Kwa-Zulu-Natal, South Africa.

An estimated 6% of the world population has serious mental illness, with one in four families having a member with some form of psychiatric disorder, who is mostly cared for by their relatives within a family setting. Although care-giving in a home setting is reported to be associated with significant mental distress, the burden of such distress is rarely measured. The purpose of this study was to quantify the burden of care among family caregivers of relatives with serious mental disorders, as well as to explore possible associations between the caregiver burden of care and a range of caregiver and Mental Health Care User (MHCU) variables in a rural district in Kwa-Zulu Natal, South Africa. The Zarit Burden Interview (ZBI) scale was used to collect data from 357 caregivers, and STATA 14 was used to analyze data. The ages of the sample ranged from 18 to 65 years, with a mean of 50.29, and the majority (86%) were female and unemployed (83%). The ZBI scores ranged from 8 to 85, with a mean of 41.59. The majority (91%) were found to be affected by family caregiver burden, which ranged from mild to severe. Using the Pearson Chi-square test of association (p = 0.05), variables that were significantly associated with the burden of care were clinically related (caregiver self-reported depression, MHCU diagnosis, recent relapse of the MHCU), socio-economic (caregiver family monthly income, MHCU disability grant status and MHCU employment status) and socio-demographic (MHCU gender and MHCU level of education). The prevalence of the burden of care is high and severe, and the scarcity of resources in families and communities contributes to the high burden of care in these rural communities.

Burden in caregivers of primary care patients with dementia: influence of neuropsychiatric symptoms according to disease stage (NeDEM project).

BACKGROUND: Caregiver burden is related to personal factors and patient characteristics and is greater when neuropsychiatric symptoms (NPSs) are present. OBJECTIVE: Estimate the prevalence of burden among caregivers of dementia patients and its association with NPSs and identify NPSs causing greater caregiver distress according to dementia stage. METHODS: A cross-sectional observational study in caregivers of noninstitutionalized dementia patients was conducted. Caregiver variables were sociodemographic, time of care, NPS-associated distress based on the Neuropsychiatric Inventory Caregiver Distress Scale (NPI-D) and burden based on the Zarit Burden Interview (ZBI). Patient variables were time since disease onset, Global Deterioration Scale (GDS) disease stage, functional assessment and NPS presence and intensity according to the Neuropsychiatric Inventory (NPI). The mean ZBI score, prevalence of burden and NPI-D score with 95% CIs at each dementia stage were estimated. Factors associated with burden were identified by multivariate analysis. RESULTS: Of the 125 caregivers included, 77.6% were women, with a mean age of 60.7 (± 14.3) years; 78.4% (95%CI: 71.0; 86.0) experienced burden. The mean ZBI score was 12.3 (95%CI: 11.6; 12.9) and increased according to NPS number (p = 0.042). The NPSs causing the most burden were disinhibition (93.5%), irritability (87.3%) and agitation (86.1%). Agitation, apathy, and sleep disorders were the NPSs generating the greatest overall caregiver distress; depression (max NPI-D 1.9), hyperactivity (max NPI-D 2.1), and psychosis symptoms (max NPI-D 1.6) generated the greatest distress at stage GDS 3, stages GDS 4-5, and stages GDS 6-7, respectively. The NPI score (OR = 1.0, 95%CI 1.0; 1.1), intensity of irritability (OR = 1.2, 95%CI 1.0; 1.6), disinhibition (OR = 2.6, 95%CI 1.1; 5.8) and hyperactivity subsyndrome (OR = 1.1, 95%CI 1.0; 1.2) were associated with caregiver burden. Other associated factors were female gender (OR = 6.0, 95%CI 1.6; 22.8), ≥ 8 h daily care (OR = 5.6, 95%CI 1.4; 22.8), working outside the home (OR = 7.6, 95%CI 1.8; 31.8), living with the patient (OR = 4.5, 95%CI 1.1; 19.6), kinship (OR = 5.4, 95%CI 1.0; 28.2) and lower patient education (OR = 8.3, 95%CI 2.3; 30.3). CONCLUSIONS: The burden on caregivers of dementia patients is high and associated with NPS presence and intensity. Disinhibition and irritability caused the highest burden. Depression, hyperactivity and psychosis produce more distress in mild, mild-moderate and severe dementia, respectively.

Depression status and functional outcome of patients with ischemic stroke and the impact on caregivers living in Chengdu: a cross-sectional study.

Objectives: To investigate the associations between risk factors and depression symptoms in ischemic stroke (IS) survivors and the effect of IS survivors' depression status and functional outcomes on caregiver burden in Chengdu, China. Methods: In this cross-sectional study, we recruited a convenience sample of patients with IS and paired caregivers living in Chengdu from February 2022 to May 2022. Depression symptoms were assessed using the 17-item Chinese Hamilton Depression Rating Scale, the social support of patients was assessed using the perceived social support scale (PSSS), caregiver burden was assessed using the Zarit burden interview (ZBI). Multivariable logistic regression analysis was used to analyze the data between risk factors and depression symptoms, and multiple linear regression models were constructed to examine the depression symptoms and functional outcomes of stroke survivors, and caregiver burden. Results: In total, 966 IS survivors and paired caregivers were included in this study. Among IS survivors, 35.51% (343/966) experienced depression. Age [adjusted odds ratio (aOR), 1.02; 95% confidence interval (CI), 1.00-1.04; p = 0.036], the National Institutes of Health Stroke Scale (NIHSS) score (aOR, 1.57; 95% CI, 1.47-1.68; p < 0.001), and PSSS score (aOR, 0.86; 95% CI, 0.84-0.89; p < 0.001) were associated with an increased risk of depression. The NIHSS score (b = 2.57, p < 0.001), patients' depression status (b = 2.54, p < 0.001), duration of care (b = 0.359, p = 0.006), and social support of caregivers (b = -0.894, p = 0.038) were significantly associated with the ZBI score. Conclusion: The PSSS score was a major risk factor for the development of depression in IS survivors, and patients' depression status and severe functional deficits had a negative impact on the ZBI score of the main caregivers. Social support can reduce the ZBI score.

Corrigendum: A comparison of caregiver burden for different types of dementia: an 18-month retrospective cohort study.

[This corrects the article DOI: 10.3389/fpsyg.2021.798315.].

New insights from a multi-ethnic Asian progressive supranuclear palsy cohort.

BACKGROUND: Progressive supranuclear palsy (PSP) is a rare, disabling, neurodegenerative disease, with few studies done in Asian populations. METHODS: We prospectively characterized the clinical features and disease burden in a consecutively-recruited multi-ethnic Asian PSP cohort. Patients were extensively phenotyped using the Movement Disorder Society (MDS-PSP) clinical diagnostic criteria and the PSP-Clinical Deficits Scale (PSP-CDS). Caregiver burden was measured using the modified Zarit Burden Interview (ZBI). Investigations (neuroimaging and genetic tests) were reviewed. RESULTS: There were 104 patients (64.4% male; 67.3% Chinese, 21.2% Indians, 9.6% Malays), consisting of 48.1% Richardson syndrome (PSP-RS), 37.5% parkinsonian phenotype (PSP-P), and 10.6% progressive gait freezing phenotype (PSP-PGF). Mean age at motor onset was 66.3 ± 7.7 years, with no significant differences between the PSP phenotypes. Interestingly, REM-sleep behaviour disorder (RBD) symptoms and visual hallucinations (considered rare in PSP) were reported in 23.5% and 22.8% of patients, respectively, and a family history of possible neurodegenerative or movement disorder in 20.4%. PSP-CDS scores were highest (worst) in PSP-RS; and correlated moderately with disease duration (rs = 0.45, P < 0.001) and weakly with caregiver burden (rs = 0.22, P = 0.029) in the overall cohort. Three of 48 (6.3%) patients who had whole-exome sequencing harboured pathogenic/likely pathogenic GBA variants. CONCLUSIONS: Significant heterogeneity in clinical features and disease burden, and high rates of RBD symptoms, visual hallucinations, and familial involvement were observed in this relatively large cohort. Our findings highlight important considerations when assessing Asian patients, and provide further support for the notion of overlapping neurobiology between PSP and Lewy body disorders.

Impact of advanced Parkinson's disease on caregivers: an international real-world study.

BACKGROUND: Caring for a partner or family member with Parkinson's disease (PD) negatively affects the caregiver's own physical and emotional well-being, especially those caring for people with advanced PD (APD). This study was designed to examine the impact of APD on caregiver perceived burden, quality of life (QoL), and health status. METHODS: Dyads of people with PD and their primary caregivers were identified from the Adelphi Parkinson's Disease Specific Program (DSP™) using real-world data from the United States, Japan and five European countries. Questionnaires were used to capture measures of clinical burden (people with PD) and caregiver burden (caregivers). RESULTS: Data from 721 patient-caregiver dyads in seven countries were captured. Caregivers had a mean age 62.6 years, 71.6% were female, and 70.4% were a spouse. Caregivers for people with APD had a greater perceived burden, were more likely to take medication and had lower caregiver treatment satisfaction than those caring for people with early or intermediate PD; similar findings were observed for caregivers of people with intermediate versus early PD. Caregivers for people with intermediate PD were also less likely to be employed than those with early PD (25.3% vs 42.4%) and spent more time caring (6.6 vs 3.2 h/day). CONCLUSIONS: This real-world study demonstrates that caregivers of people with APD experience a greater burden than those caring for people with early PD. This highlights the importance of including caregiver-centric measures in future studies, and emphasizes the need for implementing treatments that reduce caregiver burden in APD. TRIAL REGISTRATION: N/A.

Development and Psychometric Validation of the 27 Item Zarit Caregiver Interview for Alzheimer's Disease (ZCI-AD-27).

BACKGROUND: Caring for an individual with Alzheimer's disease (AD) is an allencompassing challenge that affects daily life. Assessment of the care partner experience is needed to support the development and evaluation of successful interventions for people with AD and their care partners. We developed the 27-item Zarit Caregiver Interview for Alzheimer's Disease (ZCI-AD-27) to assess the impact of informal caregiving in the context of AD. OBJECTIVE: We assessed the psychometric validity of the ZCI-AD-27 in a population of care partners for individuals with moderate AD, and established thresholds for meaningful score change. METHODS: Secondary data were obtained from informal care partners of participants in a clinical trial (NCT01677754). Psychometric analyses were conducted to assess validity, reliability, and responsiveness of the ZCI-AD-27. Anchor-based and distribution-based methods were performed to determine clinically meaningful score change. RESULTS: The ZCI-AD-27 had a 12-domain factor structure, including a second-order domain termed Humanistic impact that included four key domains (Physical, Emotional, Social, and Daily life) as confirmed by confirmatory factor analysis with the adequate fit. Internal consistency (Cronbach's alpha ranging from 0.66 to 0.93 for domains), convergent validity, and discriminant validity indicated the good performance of the ZCI-AD-27. Known-groups validity analyses showed a greater impact on care partners with increasing disease severity. Responsiveness results demonstrated that the ZCI-AD- 27 is sensitive to change over time and meaningful change analyses indicated a range of meaningful score changes in this population. CONCLUSION: The ZCI-AD-27 is a comprehensive, psychometrically valid measure to assess the impact of caring for individuals with moderate AD.

Perceived Burden of Care among Parents of Children with Sickle Cell Disease.

BACKGROUND: Children affected with Sickle Cell Disease mostly depend on their parents for assistance which creates physical, emotional, social, and financial burdens among the parents. The objective of this study was to find out the level of perceived burden of care among parents of children with sickle cell disease in a hospital. METHODS: A descriptive cross-sectional research design was used with a quantitative approach. The data were collected using a structured interview schedule using the Zarit Burden Interview scale among 152 parents attending the social service unit of Bheri Hospital, Nepalgunj. A nonprobability purposive sampling technique was used. Data were analyzed using Statistical Package for Social Science (SPSS), version 20. The Chi-square test was used to measure the association between the level of burden of care and selected variables. RESULTS: One hundred and fifty-two parents were included in the study, among which more than half (58.6%) were fathers. More than half (52.0%) of parents perceived mild to moderate burden with a Mean±SD score of level of burden is 1.26±0.44. A significant statistical association was found between the level of burden of care and the relationship to the child (p=0.002), and the type of family (p=0.04). CONCLUSIONS: The study showed that the majority of the parents' perceived a mild to moderate burden.

Burden of informal caregivers of patients with pressure ulcers in a primary care setting.

OBJECTIVE: The aim of this study was to assess the burden experienced by the caregivers of patients with pressure ulcers (PUs) and the variables that might contribute to its manifestation. METHOD: This cross-sectional study enrolled primary care patients and their informal caregivers. To assess the burden experienced by the caregivers, the Zarit Burden Interview, short-form version (ZBI) was used. This instrument was self-applied by the caregiver. We assessed PU status, demographic and clinical variables. The Kolmogorov-Smirnov test was used to test for normality, the Spearman's rank correlation coefficient (rs) test to assess the correlation between variables, and paired Student's t-test to compare the difference between the groups, with and without burden. RESULTS: Patients (n=54) were older, mean age 82±9.92 years, mainly female (64.8%), with an average of 1.47±0.73 PUs. The informal caregivers (n=46) were: primarily female (84.8%); mean age 57.13±11.87 years; 20.8% were unemployed; 14.6% were retired; 60.4% were the patient's offspring and 14.8% were spouses. Informal caregivers reported that they spent on average 10.20±8.10 hours each day taking care of their patient. The caregivers' (n=46) ZBI score was, on average, 14.63±9.60, and 37.0% reported a high burden. We did not find any correlation between caregiver burden and number of PUs (p=0.148), number of hours spent taking care of the patient (p=0.364) and age of the caregiver (p=0.259). CONCLUSION: Over one-third of the informal caregivers of the PU patients in this study reported a high burden. We did not find any correlation with the variables analysed, probably due to the small sample size.

Burden of caregiving for cardiovascular dysautonomia in Parkinson's disease.

PURPOSE: We sought to estimate the impact of cardiovascular autonomic neuropathy (cAN) on informal caregivers of patients with Parkinson's disease (PD), defined as individuals providing regular care to a friend, partner, or family member with PD, and to evaluate the mutual relationship between caregiver burden and patient health-related quality of life (HRQoL). METHODS: We enrolled 36 consecutive patients with PD and their informal caregivers. Patients underwent a detailed motor, autonomic, cognitive, and functional assessment. Caregivers were assessed using the Zarit Burden Interview (ZBI). Differences in caregiver burden, expressed by the ZBI score, and strength of association between caregiver burden, cAN, and HRQoL were assessed using analysis of covariance (ANCOVA), logistic regression, and linear regression analyses. Analyses were adjusted for patients' age, PD duration, and motor and cognitive disability, as well as caregivers' age. RESULTS: Moderate-severe caregiver burden was reported in 41.7% of PDcAN+ versus 8.7% of PDcAN- (p < 0.001). The ZBI score was increased in PDcAN+ versus PDcAN- (31.5 ± 3.4 versus 15.2 ± 2.3; p < 0.001), with tenfold higher odds (p = 0.012) of moderate-severe caregiver burden in PDcAN+, even after adjusting for potential confounders. The ZBI score correlated with cAN severity (p = 0.005), global autonomic impairment (p = 0.012), and HRQoL impairment (p < 0.001). CONCLUSION: These results highlight the significant impact of cAN on PD caregivers and the need for targeted interventions addressing this frequently overlooked and insufficiently treated source of nonmotor disability in PD.

Experience of burden of care among adult caregivers of elderly persons in Oyo State, Nigeria: a cross-sectional study.

Introduction: caring for elderly persons is challenging for caregivers due to elderly persons´ increased dependence and reduced physical strength. This study assessed the burden of care experienced by caregivers of elderly persons in family settings. Methods: this cross-sectional study used a multistage cluster sampling technique to select 1,119 caregivers of elderly persons aged 18-59 years from one rural and one urban local government area in Oyo State, Nigeria. Interviewer-administered questionnaires collected information on caregiving arrangements and burden of care experienced (determined using the modified short version of the Zarit Burden Interview). Results: caregivers´ mean age was 38.6 ± 8.7 years with 50.2% aged ≥40 years. There were more females (59.8%) than males (40.2%) and 78.4% were married. Only 47.8% were primary caregivers, 54% cared for their parents and 2% cared for non-relatives. Prior to their caregiving, 81% reported good relationships with the elderly. Although 80.3% of the elderly were reported to be fully independent for activities of daily living, 74.0% of the caregivers experienced burden of care with 28.2% reporting severe burden. The odds of burden of care were 10 times higher among rural than urban caregivers (OR=10.09, 95%CI=5.99-17.01); eight times higher among those with poor than those with good mental health status (OR=7.90, 95%CI=4.60-13.57) three times higher among those with dependent than independent elders (OR=2.74, 95%CI=1.68-4.47). Conclusion: experience of burden of care was high among caregivers in the rural area and those with poor mental health. Community-oriented support including daycare centres and old people´s homes will provide relief to caregivers.

Burden Among Caregivers of Pediatric Patients with Neurofibromatosis Type 1 (NF1) and Plexiform Neurofibroma (PN) in the United States: A Cross-Sectional Study.

INTRODUCTION: Patients with neurofibromatosis type 1 (NF1) may develop plexiform neurofibromas (PNs) that can cause disfigurement, pain, and dysfunction, and may even be life-threatening. Studies have indicated NF1-PN can substantially impact the quality of life (QoL) of pediatric patients. However, research on caregiver burden is scarce. METHODS: Caregivers of pediatric patients ages 2-18 years with NF1-PN in the USA were recruited through the Children's Tumor Foundation to participate in an online cross-sectional survey (December 2020-January 2021). Caregiver burden was measured using the Zarit Burden Interview (ZBI), and productivity loss from patientcare was measured using the Work Productivity and Activity Impairment questionnaire, adapted for caregiving (WPAI:CG). RESULTS: Ninety-five caregivers were recruited with a median age of 44.0 years. Most were female (88.4%), white/Caucasian (85.3%), and did not have NF1 or PN (86.3% and 89.5%, respectively). Commonly reported health conditions among caregivers include anxiety (48.4%) and depression (34.7%). On the ZBI (range 0-88; higher = greater burden), mean (SD) scores were 23.0 (13.8) and 12.7% of caregivers reported moderate-severe (scores 41-60) or severe burden (scores 61-88). Fifty-six caregivers were employed and working in the 7 days prior to completing the WPAI:CG. They reported missing an average of 6.9% of their working hours and an average reduction of 17.3% of on-the-job effectiveness, contributing to 22.3% loss in work productivity. Among all 95 caregivers, an average of 17.2% of regular daily activities were impaired. CONCLUSIONS: The burden among caregivers of pediatric patients with NF1-PN is considerable and underscores an unmet need for better disease management.

Caregiving concerns and clinical characteristics across neurodegenerative and cerebrovascular disorders in the Ontario neurodegenerative disease research initiative.

OBJECTIVES: Caregiving burdens are a substantial concern in the clinical care of persons with neurodegenerative disorders. In the Ontario Neurodegenerative Disease Research Initiative, we used the Zarit's Burden Interview (ZBI) to examine: (1) the types of burdens captured by the ZBI in a cross-disorder sample of neurodegenerative conditions (2) whether there are categorical or disorder-specific effects on caregiving burdens, and (3) which demographic, clinical, and cognitive measures are related to burden(s) in neurodegenerative disorders? METHODS/DESIGN: N = 504 participants and their study partners (e.g., family, friends) across: Alzheimer's disease/mild cognitive impairment (AD/MCI; n = 120), Parkinson's disease (PD; n = 136), amyotrophic lateral sclerosis (ALS; n = 38), frontotemporal dementia (FTD; n = 53), and cerebrovascular disease (CVD; n = 157). Study partners provided information about themselves, and information about the clinical participants (e.g., activities of daily living (ADL)). We used Correspondence Analysis to identify types of caregiving concerns in the ZBI. We then identified relationships between those concerns and demographic and clinical measures, and a cognitive battery. RESULTS: We found three components in the ZBI. The first was "overall burden" and was (1) strongly related to increased neuropsychiatric symptoms (NPI severity r = 0.586, NPI distress r = 0.587) and decreased independence in ADL (instrumental ADLs r = -0.566, basic ADLs r = -0.43), (2) moderately related to cognition (MoCA r = -0.268), and (3) showed little-to-no differences between disorders. The second and third components together showed four types of caregiving concerns: current care of the person with the neurodegenerative disease, future care of the person with the neurodegenerative disease, personal concerns of study partners, and social concerns of study partners. CONCLUSIONS: Our results suggest that the experience of caregiving in neurodegenerative and cerebrovascular diseases is individualized and is not defined by diagnostic categories. Our findings highlight the importance of targeting ADL and neuropsychiatric symptoms with caregiver-personalized solutions.

Psychometric Properties of the Zarit Burden Interview in Informal Caregivers of Persons With Intellectual Disabilities.

Intellectual disability leads to a loss of autonomy and a high level of dependence, requiring support from another person permanently. Therefore, it is necessary to incorporate the assessment of caregiver burden in healthcare actions, to avoid putting the health of caregivers and patients at risk. In this sense, the study aimed to analyze the internal structure of the Zarit Burden Interview (ZBI) in a sample of caregivers of people with intellectual disabilities, to provide convergent and discriminant evidence with a measure of the risk of maltreatment, and to estimate the reliability of the scores from the Classical Test Theory and the Rasch Measurement Theory. The study was instrumental. The sample consisted of 287 Peruvian informal primary caregivers of persons diagnosed with intellectual disabilities. To collect validity evidence, the internal structure (confirmatory factor analysis, CFA) and the relationship with other variables (convergent and discriminant evidence) were used, while reliability was estimated through the omega coefficient and Rasch analysis. The internal structure of the ZBI corroborated a unidimensional structure. In terms of convergent and discriminant evidence, the scale presents adequate evidence. Reliability levels were also good. Previously, the psychometric properties of the ZBI have not been studied in caregivers of people with intellectual disabilities, and it represents the first study of the scale in Peru. The results obtained will allow the use of this scale to design actions in the work with caregivers and studies to understand the psychology of the caregiver.

Improving Caregiver Burden by a Peer-Led Mentoring Program for Caregivers of Patients With Chronic Kidney Disease: Randomized Controlled Trial.

Chronic kidney disease (CKD) is associated with substantial morbidity, mortality, cost, and increased caregiver burden. Peer mentoring (PM) improves multiple outcomes in various chronic diseases. The effect of PM on caregiver burden among caregivers of patients with CKD has not been studied. We conducted a randomized clinical trial to test the effectiveness of a structured PM program on burden of care among caregivers of patients with CKD. We randomized 86 caregivers to receive 6 months of intervention in 1 of 3 groups: (1) face-to-face PM (n = 29); (2) online PM (n = 29); and (3) usual care: textbook-only (n = 28). Peer mentors were caregivers of patients with CKD, who received 16 h of instruction. All participants received a copy of a textbook, which contains detailed information about kidney disease. Participants in the PM groups received FTF or online PM for 6 months. The outcome was time-related change in the Zarit Burden Interview (ZBI) score. There was a statistically significant decrease in the ZBI score (SE: -3.44; CI: -6.31, -0.57 [p = 0.002]) compared with baseline, among the online PM group. Online PM led to decreased caregiver burden among caregivers of patients with CKD. The study was limited to English-speaking subjects with computer literacy.