Caregiver Employment Status Research Articles

Primary caregiver employment status is associated with traumatic brain injury in children in the USA

BackgroundTraumatic brain injury (TBI) is a common injury in children. Previous literature has demonstrated that TBI may be associated with supervision level. We hypothesised that primary caregiver employment would be...

Family Support of Older Caregivers: Factors Influencing Change in Quality of Life.

Understanding factors that can improve the quality of life (QOL) of older caregivers of people with intellectual and developmental disabilities (IDD) is important in broadening participation in family empowerment interventions. The purpose of this study was to identify the factors influencing the QOL of older caregivers (50+) of adults with IDD who participated in a peer-mediated state-wide family support project. The research study used a quasi-experimental research design grounded in the family quality of life (FQOL) framework, with pretest and posttest data gathered from 82 caregivers. Correlation and regression analyses were conducted to identify factors influencing changes in the QOL of study participants. Findings indicated that improvements in caregiver QOL after participating in the project could be explained by caregiver's employment status, increased global FQOL, and decreased caregiver stress and depression.

Financial toxicity in dementia caregiving

AbstractBackgroundDementia caregiving is associated with significant financial costs. The term “financial toxicity” has been used in many care settings to describe the negative effects of medical expenses on both financial security and health‐related quality of life. Here, we utilize the validated COmprehensive Score for financial Toxicity (COST) to examine the experience of financial toxicity in American dementia caregiving.MethodWe conducted a nationally representative survey of 317 US dementia caregivers, oversampling non‐Hispanic Black (n = 75) and Hispanic (n = 61) caregivers, with the COST questionnaire. Financial toxicity was defined as COST <26 and further categorized as mild (COST ≥14 & <26), moderate (COST >0 & <14), or severe (COST = 0) according to the measure’s predetermined cut points. COST was treated categorically to generate descriptive statistics and continuously for linear regression. We built nested multivariable models to use in our regression‐based analysis. The base model included key caregiver demographics (age, gender, race/ethnicity, rurality), to which the fully adjusted model added supplementary caregiver demographics, care recipient clinical characteristics, and caregiver‐recipient relational characteristics.ResultSurvey‐weighted categorical analysis revealed 52.7% of American caregivers experience some degree of financial toxicity. Of those who experience financial toxicity, 73.1% are classified as mild, 25.7% as moderate, and 1.2% as severe. Financial toxicity was identified in 69.5% of non‐Hispanic Black, 54.1% of Hispanic, and 42.3% of non‐Hispanic White caregivers, with non‐Hispanic Black caregivers significantly more likely to experience financial toxicity compared to non‐Hispanic White caregivers (p = 0.017). In our base linear regression model, older caregiver age was protective against financial toxicity (p = 0.024). Caregiver employment status mediated this effect in the fully adjusted model, with retirement protective against financial toxicity (p <0.001). In contrast, unemployment predisposed caregivers to financial toxicity (p <0.001).ConclusionMost dementia caregivers in the US experience financial toxicity, with Non‐Hispanic Black caregivers bearing the highest risk. Older caregiver age protects against financial toxicity, likely due to the relationship between age and retirement.

소아암 아동․청소년 돌봄자의 돌봄노동 실태 및 돌봄노동 지원 욕구의 기초연구

The purpose of this study is to conduct a basic research on the current situation of care work and support needs of caregivers of children and adolescents with childhood cancer through in-depth interviews, a qualitative research method. Specifically, we conducted in-depth interviews with 12 caregivers of children and adolescents with pediatric cancer. We collected and analyzed qualitative data by asking them to fill out a daily(weekday and weekend) caregiving time and content survey questionnaire. The study showed the following results. First, the current care work status of caregivers of childhood cancer patients presented information on 1) care work intensity, 2) employment status of caregivers, 3) support network for care work, 4) care work-related costs and use of facilities to reduce the burden of care work, 5) perception of care work, 6) perception on obstacles in care work, 7) impact of excessive care work, and 8) status of daily time spent on care work and its content. Second, the results on the support needs of caregivers for care work revealed necessity to expand the social system and social support network in order to alleviate the burden of care work. Finally, we conclude with implications and suggestions for further research based on these findings.

Equity factors in pediatric transplant listing: Initial findings from a single center review.

In order to improve transparency within the patient selection process, a transplant listing advisory committee was formed within the Boston Children's Hospital Pediatric Transplant Center. Its mission is to promote equity in access to organ transplantation by ensuring that the institutional transplant selection criteria are fair, unbiased, and nondiscriminatory. The committee conducts comprehensive case and data review of individual characteristics and reviews in aggregate to identify potential systems bias. Charts for 256 patients evaluated for transplant from 3/2016 to 3/2019 were reviewed. Among these, 64 (25%) patients were declined for transplant. Univariate logistic regression analysis was used to identify demographic variables and vulnerable status factors associated with being declined. Odds ratios (OR) are reported. Among all patients, median age was 8.5 years and 58% were male. Asian patients were more likely to be declined than White patients (OR=5.3, Wald p=.007). Socioeconomic factors that affected likelihood of listing decline included concerns for caregivers' ability to manage and understand care requirements (OR=3.8, p=.011), caregiver employment status (OR=1.9, p=.042), and use of public assistance programs (OR=2.2, p=.05). Patients with severe neurodevelopmental delay were more likely to be declined for listing (OR=3.7, p=.019). This analysis identified areas of potential bias related to race, socioeconomic status, and neurodevelopmental delay where initiatives can be targeted. Advisory committees are an important aspect of evaluating equity in transplant center selection policy and practice.

Resilience Level of the Family Caregivers of the Elderly in Mashhad, Iran During the COVID-19 Pandemic

Background & Aims Resilience is defined as a person’s ability to maintain psychological balance and recover from challenging conditions. Due to the very important role of family caregivers in the treatment of older patients with COVID-19, attention to their health and well-being has been increased. This study aims to determine the resilience level of the family caregivers of older people during COVID-19 pandemic in Mashahd, Iran. Materials & Methods This descriptive-analytical study was conducted on 120 family caregivers of older people who referred to urban health centers in Mashhad, Iran. Sampling was done in using cluster random sampling method from April to June 2022. The instrument was a two-part questionnaire included demographic form (surveying age of the elderly and caregiver, gender of caregiver, educational level of caregiver, employment status of caregiver, marital status of caregiver, and the relation of caregiver with the elderly) and the Connor-Davidson resilience scale. Data analysis was done in SPSS v.23 software using descriptive and inferential statistics. Results The mean age of family caregivers and elderly were 39.94±1.32 and 74.44±3.17 years, respectively. The age of caregivers ranged 20-74 years and the age of the elderly ranged 60-89 years. The mean resilience score of caregivers was 49.40±13.07, which is low. There was a significant relationship between resilience score and educational level (P<0.05), marital status (P<0.001) and employment status of family caregivers (P<0.05). The correlation between resilience and caregiver’s age (r=0.17) and elderly’s age (r=0.13) was positive, but weak. Conclusion Family caregivers of the elderly in Mashhad city have low resilience. Their educational level, employment status, and marital status are related to their resilience level. Attention to these factors can help health care providers to develop plans for increasing their resilience and improving the quality of life of the elderly.

Predictors of family violence in North Carolina following initial COVID-19 stay-at-home orders

BackgroundAlthough there is evidence that family violence increased in the United States during the COVID-19 pandemic, few studies have characterized longitudinal trends in family violence across the course of initial stay-at-home orders. ObjectiveThe purpose of the present study is to investigate patterns and predictors of family violence, such as child maltreatment and harsh punishment, during the first eight weeks of the pandemic after initial stay-at-home orders in North Carolina. Participants and settingParticipants included 120 families with children ages 4–11 (53% non-White, 49% female) and a primary caregiver (98% female) living in rural and suburban areas in North Carolina. Participants were recruited based on high risk of pre-pandemic family violence exposure. MethodsCaregivers completed weekly surveys during the pandemic assessing family violence, caregiver employment status, and caregiver emotion reactivity. In addition, all caregivers completed pre-pandemic surveys on family violence. ResultsMixed-effects models revealed that family violence was highest following initial stay-at-home orders and decreased linearly over time. Higher pre-pandemic child violence exposure and caregiver unemployment were associated with higher initial family violence. Higher caregiver emotion reactivity was associated with changes in family violence across time. ConclusionsWe observed high levels of family violence following stay-at-home orders, especially in families with higher baseline violence, higher caregiver emotion reactivity, and caregiver unemployment or underemployment. These associations suggest that vulnerable families may respond to the additional stressor of stay-at-home orders with increased violence and thus need additional support in moments of crisis.

The association between family impact and health-related quality of life of children with idiopathic central precocious puberty in Chongqing, China

BackgroundIdiopathic central precocious puberty (ICPP) reduces patient health-related quality of life (HRQoL). The impacts of disease and treatment on families are also an important concern. This study aimed to assess the association between family impact and HRQoL of children with ICPP.MethodsWe conducted a case–control study in Chongqing, China. A case group of 134 children with ICPP aged 5–12 years and their caregivers was recruited from a children’s hospital in Chongqing. A total of 210 gender- and age-matched subjects from two primary schools were selected as controls. PedsQLTM4.0 Generic Core Scales (GCS) and PedsQL™ Family Impact Module (FIM) were used in this study.ResultsChildren with ICPP scored lower than controls in all HRQoL domains except physical functioning. In particular, the two groups were significantly different in emotional functioning scores (d = 0.414, P < 0.001). Compared with controls, ICPP families had lower scores in all dimensions of the FIM scale (d = 0.288–1.030, all P < 0.05). Factors associated with HRQoL of ICPP patients included: age of patients, type of medical treatment, employment status of caregivers, educational level of caregivers, parent HRQoL and family functioning (all P < 0.05).ConclusionsChildren with ICPP demonstrated lower quality of life and greater family impact compared to healthy controls. In addition, less impact of disease on parent HRQoL and family functioning was associated with better HRQoL of ICPP patients, patients aged older, treated with drug combination, cared by employed or well-educated caregivers reported better HRQoL. Health care professionals should pay more attention to younger patients treated with GnRHa alone, and provide targeted interventions for caregivers depending on their demographic background to reduce family impact and thereby improve patient HRQoL.

Investigation of Depression in Cancer Patient’s Caregivers in Combined Military Hospital, Rawalpindi

Background: Cancer is the second leading cause of death, responsible for 1 in 6 deaths globally and Caregivers play a major role in cancer patients' care and rehabilitation. They may face several psychological issues like depression along with physical and emotional disadvantages, and significant financial consequences. The objective of this study is to find out the associations of Depression with demographic variables among family caregivers of cancer patients in combined Military Hospital, Rawalpindi. Methods: This was a cross-sectional study conducted in the OPD and IPD of the Oncology department of CMH, Rawalpindi between February and July 2020. The 384 adult cancer patient’s caregivers visiting oncology department were assessed to find out level of depression after getting informed consent. Data was collected by Demographic questionnaire and Beck Depression Inventory (BDI) tool. Chi-square test and Likelihood ratio chi-square test used to find association. Results: Out of all 384 caregivers 181 (47.1 %) were males and 203 (52.9 %) were females. 267 (69.5 %) were diagnosed as non-depressive while 117 (30.5 %) were diagnosed as Depressive. A considerable association has been found between Depression and Age of caregivers (p= 0.006), Gender of caregivers (p &lt;0.05), employment status of caregivers (0.02) and relationship to a cancer patient (p = 0.003). Conclusion: A high prevalence of depression is found in cancer patient’s caregivers and Depression is significantly associated with Age of caregivers, Gender of caregivers, employment status of caregivers, and the relationship to cancer patients.

Assessment of Informal Caregiver Assistance and Strain With Total Hip and Knee Arthroplasty

BackgroundThe purpose of our study is to assess which patient-related and caregiver-related factors are predictive of caregiver strain and assistance when caring for total hip and knee arthroplasty (THA and TKA) patients within 2 weeks after surgery. MethodsWe conducted a prospective study of caregivers of participants enrolled in 2 randomized trials. Caregivers provided demographics and completed the Caregiver Strain Index and Caregiver Assistance Scale pre-surgery and post-surgery. We performed backwards stepwise regression with mixed-effects negative binomial models to investigate predictors of caregiver strain and assistance for THA and TKA caregivers. ResultsThree hundred six caregiver/patient pairs were included. Our models of caregiver strain found Caregiver Assistance Scale scores and patient age to be predictive for all caregivers. We also found caregiver gender and smoking status to be predictive for THA caregivers and caregiver age to be predictive for TKA caregivers. Our models of assistance provided by caregivers found time (post-surgery vs pre-surgery) was predictive for all caregivers. We also found patient body mass index, and patient and caregiver gender to be predictive for THA caregivers, and patient and caregiver employment status and caregiver education level to be predictive for TKA caregivers. ConclusionOur study identifies patient-related and caregiver-related factors which are associated with caregiver strain and assistance when caring for arthroplasty patients. As this is the first study to assess assistance provided by caregivers, it is important for future research to validate our results and to further explore whether patient-reported outcomes may also be related to assistance and strain.

Las personas trabajadoras del cuidado de niñas y niños en casa hogar de México

El propósito del artículo fue explorar la condición laboral de los encargados del trabajo de cuidados de niñas y niños en casas hogar de México. Para ello se realizó una investigación de carácter documental. Como referente, se tomó el Censo de Alojamiento de Asistencia Social, realizado en el 2015; así como información provista por el Consejo Nacional de Normalización y Certificación de Competencias Laborales, respecto a la certificación en el estándar de competencia EC0934 Atención de niñas, niños y adolescentes en establecimientos de asistencia social. La indagación permitió dar cuenta de distintos tipos de cuidadores, de un incipiente reconocimiento de esta actividad y de posibles líneas de investigación.

Sociodemographic Factors That Influence the Choice to Pursue Nasoalveolar Molding: One Pediatric Hospital's Experience.

To identify demographic factors that influence choosing nasoalveolar molding (NAM) in the treatment of cleft lip with or without cleft palate (CL±P), and NAM treatment compliance. This work is a retrospective cohort study. Tertiary pediatric hospital. One hundred forty-nine patients with a diagnosis of unilateral complete CL±P receiving treatment when NAM was offered (January 1, 2008-July 26, 2016). Demographic variables collected included race, ethnicity, ZIP code, number of caregivers, caregiver employment status, and health insurance status. Medical variables collected included diagnosis, treatment pursued, compliance with NAM, completion of NAM, and the treating cleft surgeon and orthodontist. Data were analyzed via Fisher exact tests, χ2 tests, and multivariate logistic regression to identify factors that influence the decision to pursue NAM and treatment compliance. Univariate analyses identified the following significant factors predicting the pursuit of NAM: race and insurance type (both P < .001), surgeon (P = .005), income level (P = .009), comorbidities (P = .015), and syndromic diagnosis (P = .033). Driving distance trended toward significance (P = .078). Multivariate regression analyses indicated that Asian race (P = .047), insurance type (P = .046), driving distance (P = .019), and surgeon (P = .017) were significant predictors of pursuit of NAM. There are disparities in patient choice of NAM at our center for children with complete cleft lip. African American patient families were less likely to pursue this intervention. A stronger understanding of the barriers that lower income and minority patients face is needed in order to better characterize disparities in cleft care.

Working status of caregivers for people with dementia: Analysis data from a Japanese Nationwide Survey.

BackgroundThe prevalence of dementia has increased rapidly in Japan, while the proportion of the population accounted for by working-age individuals is facing a sharp decline. Optimizing the balance between work and caregiving for persons with dementia is a major public health issue.AimsUsing a nationally representative sample, this study investigated the working status of caregivers (CGs) for elderly people (care recipients) with dementia (CRDs) and assessed the effects of sociodemographic factors on this status.MethodsData were obtained from the 2013 Comprehensive Survey of the Living Conditions for CRDs and CGs (the latter aged 65 years or less). Individual data of CRDs and CGs were linked, and 452 pairs were extracted. The Japanese version of the Kessler 6 (K6) with a cut-off point of 13 was used to assess general psychological distress among CGs. Multivariable logistic regression analysis with the forward selection method was used to identify the predictors of their working status.ResultsOverall, the mean age of CGs was 57.1 ± 6.8 years, with 57.5% (260/452) performing paid work. Male sex, higher educational attainment, and having their own house were associated with having paid work for CGs, while higher age, spending almost all day performing nursing care, and participation in helping with toilet activities and laundry were associated with not performing paid work.ConclusionsSeveral sociodemographic factors, including nursing care-related factors, are associated with the employment status of CGs. Further research should examine detailed information on CRDs’ activities of daily living, behavioral and psychological symptoms, medical service use, and social support to strengthen the system of supportive services for both CRDs and their CGs.

Material Hardship and Indoor Allergen Exposure among Low-Income, Urban, Minority Children with Persistent Asthma.

Traditional measures of socioeconomic status (SES) are associated with asthma morbidity, but their specific contributions are unclear. Increased exposure to indoor allergens among low SES children is an important consideration. Material hardship, a concept describing poor access to basic goods and services, may explain the relationship between low SES and indoor allergen exposure, and thereby, the increased risk of asthma morbidity. We sought to (i) describe the specific hardships experienced by low-Income, urban, minority children with asthma and indoor allergen sensitization and (ii) determine if material hardship is associated with indoor allergen exposure in this population. We conducted a cross-sectional analysis of children undergoing the baseline assessment for a clinical trial of home environmental modification. Participants were scored in five domains of material hardship. Domain scores were assigned based on caregiver responses to a questionnaire and were summed to generate a total material hardship score. Linear regression was used to examine the relationship between material hardship scores and bedroom floor concentrations of five common indoor allergens. Participants experienced high levels of material hardship in each of the five domains, with 33% not having access to a car, 35% not being able to pay utility bills, and 28% not being able to pay rent in the past year. Each one-point increase in material hardship was associated with an increase in cockroach allergen of 16.2% (95% CI 9.4%, 24.6%) and an increase in mouse allergen of 9.4% (95% CI 1.0%, 18.5%). After adjusting for traditional measures of SES, including household income, health insurance type, caregiver education, and caregiver employment status, the association between material hardship and cockroach allergen, but not mouse allergen, remained. These data suggest that a significant proportion of families of low-income, minority children with asthma may experience material hardship, and that they may be at greater risk of cockroach allergen exposure than their peers with similar income, but without material hardship.

STRAIN AMONG CAREGIVERS OF OLDER BREAST CANCER PATIENTS

Caregiver strain is the emotional and physical demands associated with providing care, particularly when the needs exceed the resources. The purpose of this presentation is to illustrate the predictors of strain among caregivers of older breast cancer patients. Relationships among caregiver strain (Modified Caregiver Strain Index), age, employment status, patient characteristics and scores on the comprehensive geriatric assessment (grip strength, Timed up & Go, Mini Nutritional Assessment, MiniCog, Geriatric Depression Scale, Pittsburgh Sleep Quality Index, and Brief Fatigue Inventory) are described. This cross sectional study included women who were diagnosed with breast cancer, over the age of 69 years, receiving any type of treatment and seeking an initial assessment in a geriatric oncology program.. Dyads (N=39) had a mean patient age of 77 and caregiver age of 64 years. Most patients were diagnosed with infiltrating ductal carcinoma 30 (76.9%), most had lumpectomy 23 (59%), and were stage 1 15 (38.5%). Most patients had one caregiver 22(56.4%) who worked full-time 12(30.8) and rated their health as very good 16 (25.4%). Increasing age of the caregiver was associated with less caregiver strain (r = -0.45, p=.02). Employment status of the caregiver was significantly related to caregiver strain -0.35 (p=.03). Caregivers employed full time 3.5 (p = .08), and part time 5.9 (p=0.3) experienced greater strain (mean±SD: 9.4±8.8) than those employed full-time (4.7±3.4). Patient depression, caregiver employment status and age of the caregiver are related to caregiver strain. Healthcare providers must assess for strain in cancer givers of cancer patients.

Predictors of Caregiver Burden in Caregivers of Bedridden Patients.

ABSTRACTBackgroundCaregivers are at risk of experiencing caregiver burden. It is therefore important to determine the caregiver burden of caregivers who provide care to bedridden patients and related factors.PurposeThe aim of this study was to determine the caregiver burden of caregivers who provide care to bedridden patients and the factors that impact this burden.MethodsThis cross-sectional study was executed at a state hospital in Istanbul, Turkey, on bedridden patients registered in the home healthcare unit and their caregivers. During study period, the researchers made 312 visits to patients and their caregivers. A sociodemographic questionnaire, the Burden Interview, and the Katz Index of Independence in Activities of Daily Living were used to collect data. Descriptive statistics, an independent sample t test, one-way analysis of variance, and stepwise multiple regression analysis were used for data analysis.ResultsThe participants reported a moderate level of caregiver burden. Existing caregiver health problems, caregiver employment status, the ability of the caregiver to maintain his or her own good health, type of home, and the degree of patient dependence in terms of activities of daily living were each found to be significant predictors of caregiver burden.Conclusions/Implications of PracticeThe support provided to caregivers by home healthcare units is important in terms of protecting the physical, mental, and social health conditions of caregivers and preventing the exacerbation of caregiver burden.

Mild Cognitive Impairment and Caregiver Burden: A 3-Year-Longitudinal Study

ObjectivesMild cognitive impairment (MCI) is common, affecting 10%–35% of people over 65, and poses unique challenges for patients and their caregivers. Comparatively little research has examined caregiver burden in this population, with longitudinal research, in particular, lacking. We examined caregiver burden in a sample of people with MCI over 3 years. DesignThree-year observational study. SettingNine memory clinics in Australia. ParticipantsOne-hundred-and-eighty-five people with MCI and their caregivers. MeasurementsMeasures of caregiver burden, cognition, function, neuropsychiatric symptoms, driving status, and medication use were completed with patients and their caregivers at regular intervals over a 3-year period. ResultsBetween 21.1% and 29.5% of caregivers reported a clinically significant level of burden over the study. Patients’ higher levels of neuropsychiatric symptoms, lower functional ability, and lack of driving ability, and caregivers’ employment were associated with greater caregiver burden over time. Caregiver burden did not increase over time when controlling for patient and caregiver characteristics. ConclusionsHigh levels of caregiver burden are present in a significant proportion of caregivers of people with MCI. Clinical characteristics of patients – including severity of neuropsychiatric symptoms and functional impairment – and the employment status of caregivers predict burden. Such characteristics may help identify caregivers at greater risk of burden to target for intervention.

Care Burden and Self-Efficacy Levels of Family Caregivers of Elderly People in Turkey.

The aim of this research was to determine the level of burden and self-efficacy among family caregivers of elderly people in Turkey. This study is descriptive and cross-sectional. A total of 658 family caregivers of elderly people were included in the study. The data were collected with a caregiver's characteristics form, elderly people's characteristics form, the Zarit Burden Interview, the self-efficacy scale, and the Barthell Index. Data were analyzed using SPSS 16.0 program. What are care burden and self-efficacy levels of the caregivers? Is there a relationship between care burden and self-efficacy levels of the caregivers with variables such as age, duration of care, sex, status of education, type of relationship, and status of employment that belong to the caregiver? Is there a relationship between care burden and self-efficacy levels of the caregivers with variables such as age and Bartell Index that belong to the elderly? The caregiver burden score was 38.65 ± 13.73, which indicates a moderate level of burden. The self-efficacy score was 29.31 ± 6.09, which is in the low range of self-efficacy. There were statistically significant differences between the caregiver burden score and the sex of caregivers, status of education, type of relationship, and the elderly person's score on the Bartell Index (P < .05). The relationship between the employment status of caregivers (P = .01), the age of the elderly (P = .01), and the caregivers' score on the self-efficacy scale (P < .05) was found to be statistically significant. Study revealed that the majority of the caregivers experienced moderate levels of care burden and low levels of self-efficacy. These results will provide beneficial information for nurses to provide the holistic nursing care.

Caregiver symptom burden assessment using the Edmonton Symptom Assessment System (ESAS): A preliminary report.

227 Background: Regular assessment of caregiver symptom burden during patient visits would allow prompt referral for their care. The ESAS is a multidimensional tool used in patients but not caregivers. The objectives of this study were to determine the feasibility of the ESAS in assessing caregiver symptoms defined as completing 9/12 items, assess caregiver-reported usefulness of its completion, determine the association of symptom scores between patients, caregivers and various clinical and psychosocial factors, and determine concurrent validity with the Zarit Burden Interview-12 (ZBI-12). Methods: A prospective study of 90 patient-primary caregiver dyads in an outpatient Supportive Care Center in a cancer center was conducted. The 12 item ESAS-FS was completed by the dyads with other measures of clinical and psychosocial factors [demographics, cancer diagnosis, co-morbidities, caregiving activities, prognostic index and patient’s performance status]. Results: The ESAS is a feasible tool to assess caregiver symptom burden with 90/90 caregivers [100%] completing at least 9/12 items; 66/90 caregivers [73%] found ESAS useful to report their symptom burden. A significant association was found between ESAS scores of caregivers and patients in depression [p &lt; 0.01], psychosocial items [depression, anxiety, well-being, financial distress, spiritual pain; p &lt; 0.01], and total symptom distress scores [p &lt; 0.01]. Caregiver employment status [p = 0.03] and total caregiver activities [p = 0.04] were significantly associated with total caregiver ESAS scores. There was no significant association between patient and caregiver co-morbidities [p = 0.08], prognostic index [0.07] and performance status [p = 0.26] to total caregiver ESAS scores. Caregivers recommended certain physical symptoms such as pain and nausea may be eliminated. Concurrent validity with ZBI-12 was not achieved [r = 0.53, p = 0.74] suggesting that ESAS measured different caregiver dimensions. Conclusions: The ESAS is a feasible tool to measure caregiver symptoms and was found useful by caregivers. Further research is needed to modify the ESAS based on caregiver’s recommendations and further psychometric studies need to be conducted.

Caregiver burden and related factors in caregivers of children with autism

Objective To investigate the level of caregiver burden of primary caregivers of children with autism, and explore the factors related to caregiver burden. Methods 177 caregivers of children with autism were tested with caregiver burden inventory(CBI)and childhood autism rating scale(CARS). A cross-sectional and multisite study design was used. Results The scores of caregiver burden was (57.50±14.91), and time-dependence burden and developmental burden were the most serious domains.Caregiver burden was affected by caregiver's age, caregiver's religious beliefs, caregiver's marital status, caregiver employment status and education degree and children's scores of CARS and degree of CARS(-0.151≤r≤0.282, P<0.05). Conclusion The data suggest that community care workers should pay attention to caregivers of children with autism and give them personalized health education and intervention according to the demographic characteristics of the caregivers and the severity of children disease. Key words: Autism; Children; Caregivers; Caregiver burden