Informal and Formal Social Support and Caregiver Burden: The AGES Caregiver Survey

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Shiba, Koichiro; Kondo, Naoki; Kondo, Katsunori

2016-01-01

Background We examined the associations of informal (eg, family members and friends) and formal (eg, physician and visiting nurses) social support with caregiver’s burden in long-term care and the relationship between the number of available sources of social support and caregiver burden. Methods We conducted a mail-in survey in 2003 and used data of 2998 main caregivers of frail older adults in Aichi, Japan. We used a validated scale to assess caregiver burden. Results Multiple linear regression demonstrated that, after controlling for caregivers’ sociodemographic and other characteristics, informal social support was significantly associated with lower caregiver burden (β = −1.59, P support was not (β = −0.30, P = 0.39). Evaluating the associations by specific sources of social support, informal social supports from the caregiver’s family living together (β = −0.71, P social support was associated with lower caregiver burden only if it was from family physicians (β = −0.56, P = 0.001). Compared to caregivers without informal support, those who had one support (β = −1.62, P supports (β = −1.55, P support. Conclusions Social support from intimate social relationships may positively affect caregivers’ psychological wellbeing independent of the receipt of formal social support, resulting in less burden. PMID:27180934

Factors of caregiver burden and family functioning among Taiwanese family caregivers living with schizophrenia.

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Hsiao, Chiu-Yueh; Tsai, Yun-Fang

2015-06-01

To assess the degree of caregiver burden and family functioning among Taiwanese primary family caregivers of people with schizophrenia and to test its association with demographic characteristics, family demands, sense of coherence and family hardiness. Family caregiving is a great concern in mental illness. Yet, the correlates of caregiver burden and family functioning in primary family caregivers of individuals with schizophrenia still remain unclear. A cross-sectional descriptive study. A convenience sample of 137 primary family caregivers was recruited from two psychiatric outpatient clinics in Taiwan. Measures included a demographic information sheet and the Chinese versions of the Family Stressors Index, Family Strains Index, 13-item Sense of Coherence Scale, 18-item Caregiver Burden Scale, Family Hardiness Index and Family Adaptability, Partnership, Growth, Affection, and Resolve Index. Data analysis included descriptive statistics, Pearson's product-moment correlation coefficients, t-test, one-way analysis of variance and a stepwise multiple linear regression. Female caregivers, additional dependent relatives, increased family demands and decreased sense of coherence significantly increased caregiver burden, whereas siblings as caregivers reported lower degrees of burden than parental caregivers. Family caregivers with lower family demands, increased family hardiness and higher educational level had significantly enhanced family functioning. Sense of coherence was significantly correlated with family hardiness. Our findings highlighted the importance of sense of coherence and family hardiness in individual and family adaptation. Special attention needs to focus on therapeutic interventions that enhance sense of coherence and family hardiness, thereby improving the perception of burden of care and family functioning. Given the nature of family caregiving in schizophrenia, understanding of correlates of caregiver burden and family functioning would help

Caregiving burden and the quality of life of family caregivers of cancer patients: the relationship and correlates.

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Rha, Sun Young; Park, Yeonhee; Song, Su Kyung; Lee, Chung Eun; Lee, Jiyeon

2015-08-01

Family caregivers of cancer patients become responsible for many elements of cancer care, usually without preparation or training in provision of care. Their efforts of care generate caregiving burden, which could deteriorate caregivers' quality of life (QOL). A secondary data analysis of a cross-sectional descriptive study was conducted to describe the influence of caregiving burden on the QOL of family caregivers of cancer patients with consideration of correlates (N = 212). The Korean versions of Zarit Burden Interview and the World Health Organization QOL BREF were used. Multiple regression analyses were applied to analyze the relationship between the caregiving burden and QOL. Caregiving burden explained 30.3% of variance of the QOL (β = -0.534, p < 0.001). Caregivers caring for patients with functional deterioration experienced higher burden. Caregivers providing care for hospitalized patients demonstrated lower QOL. The caregiver's educational level was a positively contributing factor for the QOL. Caregiving burden was the influential, negatively affecting factor for the QOL. Assessment of caregiving burden with special attention being paid to caregivers caring for patients with functional decline would help to identify caregivers in need of support. Supportive care needs to be sought to alleviate caregiving burden and improve the QOL of caregivers, especially for the caregivers of hospitalized patients. Copyright © 2015 Elsevier Ltd. All rights reserved.

Social support and subjective burden in caregivers of adults and older adults: A meta-analysis

OpenAIRE

del-Pino-Casado, Rafael; Frías-Osuna, Antonio; Palomino-Moral, Pedro A.; Ruzafa-Martínez, María; Ramos-Morcillo, Antonio J.

2018-01-01

Background Despite the generally accepted belief that social support improves caregiver adjustment in general and subjective burden in particular, the literature shows mixed findings, and a recent review concluded that the predictive strength of caregiver social support in determining caregiver burden is less evident, due to the conceptual diversity of this determinant. Objective The purpose of this review is to analyse the relationship of perceived and received social support with subjective...

Caregiver burden among primary caregivers of patients undergoing peripheral blood stem cell transplantation: a cross sectional study.

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Akgul, Nur; Ozdemir, Leyla

2014-08-01

This study aimed to identify caregiver burden and influencing factors on the burden in primary caregivers of peripheral blood stem cell transplantation patients within 2-12 months following transplant, indicating early recovery period after discharge. This descriptive cross sectional study was carried out at hematopoietic stem cell transplantation outpatient units of three university hospitals in Turkey. A total of 55 patient and caregiver dyads were recruited and interviewed. The data were collected using questionnaires developed by the researchers and caregiver burden was measured with the Zarit Burden Interview. The mean score of Zarit Burden Interview was 28.41 (SD = 13.90). Patients' symptoms including nausea and self depreciation feeling were related to greater caregiver burden. Self-depreciation was referred to feeling undervalued. The mean score of the tool was significantly higher in caregivers who have not been educated beyond primary school and also caregivers who had lower income. Caregivers who supported their patients to fulfill physical needs and who did not receive help for meeting patients' psychological needs had statistically more elevated levels of burden. Moreover, the extent of care giving activities undertaken was positively correlated with caregiver burden scores. While positive impact of the care giving process on family relations decreased caregiver burden; negative effect increased the burden. This study suggests that caregiver burden of primary caregivers caring for peripheral blood stem cell transplantation patients varies by education, income status, and the extent of care giving activities undertaken. Changes in family ties and relations due to care giving effected caregiver burden. Copyright © 2014 Elsevier Ltd. All rights reserved.

[Biopsychosocial approach to caregiving burden: Why should we care about caregivers' health?

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Leurs, Antoine; Trojak, Benoit; Ponavoy, Eddy; Bonin, Bernard; Chauvet-Gelinier, Jean-Christophe

2018-06-11

There are 11 million family caregivers in France and some estimates indicate that there will be 17 million in 2020. Caregiving is a source of chronic stress that requires adaptation and coping strategies. Caregiving may benefit the health of a caregiver with a positive coping style and altruistic goals. However, the caregiver's burden is frequently associated with negative effects in terms of biopsychosocial imbalance and medical conditions, with frequent anxiety and depression. The management of the caregiving burden starts with the recognition of health professionals - caregivers may benefit from consultation-liaison psychiatry and multidisciplinary medico-social strategies, in addition to constant support from their GPs. Copyright © 2018 Elsevier Masson SAS. All rights reserved.

The burden on informal caregivers of people with bipolar disorder.

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Ogilvie, Alan D; Morant, Nicola; Goodwin, Guy M

2005-01-01

Caregivers of people with bipolar disorder may experience a different quality of burden than is seen with other illnesses. A better understanding of their concerns is necessary to improve the training of professionals working with this population. Conceptualizing caregiver burden in a conventional medical framework may not focus enough on issues important to caregivers, or on cultural and social issues. Perceptions of caregivers about bipolar disorder have important effects on levels of burden experienced. It is important to distinguish between caregivers' experience of this subjective burden and objective burden as externally appraised. Caregivers' previous experiences of health services may influence their beliefs about the illness. Caregiver burden is associated with depression, which affects patient recovery by adding stress to the living environment. The objective burden on caregivers of patients with bipolar disorder is significantly higher than for those with unipolar depression. Caregivers of bipolar patients have high levels of expressed emotion, including critical, hostile, or over-involved attitudes. Several measures have been developed to assess the care burden of patients with depressive disorders, but may be inappropriate for patients with bipolar disorder because of its cyclical nature and the stresses arising from manic and hypomanic episodes. Inter-episode symptoms pose another potential of burden in patients with bipolar disorder. Subsyndromal depressive symptoms are common in this phase of the illness, resulting in severe and widespread impairment of function. Despite the importance of assessing caregiver burden in bipolar disorder, relevant literature is scarce. The specific effects of mania and inter-episode symptoms have not been adequately addressed, and there is a lack of existing measures to assess burden adequately, causing uncertainty regarding how best to structure family interventions to optimally alleviate burden. The relatively few

A study on caregiver burden: stressors, challenges, and possible solutions.

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Bialon, Laura Nelson; Coke, Sallie

2012-05-01

The purpose of this qualitative study was to explore factors impacting caregiver burden and to explore possible solutions for family caregivers of terminally ill patients. The majority of caregivers reported experiencing role conflict and inadequate stress management. Caregivers who worked outside the home, those who cared for two parents concurrently, those with the least amount of outside assistance, and caregivers who spent a longer period of time caregiving reported the highest levels of health problems and overall burden. Caregivers stated a need for more support from Hospice agencies, more education on caregiver training, and more public education about Hospice services. Faith played a positive role in alleviating caregiver burden. Early identification, intervention, education and coordination of services may help to alleviate caregiver burden, which will improve quality of life for both patient and caregiver.

Influence of home care services on caregivers' burden and satisfaction.

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Kim, Eun-Young; Yeom, Hyun-E

2016-06-01

To examine the factors affecting the burden and satisfaction of family caregivers, focusing on the beneficial impacts of home care service use. Long-term care for older patients is a multifaceted process that brings both burden and satisfaction to family caregivers. It is expected that home care services offered by the Korean long-term care insurance may contribute to decreasing the burden of family caregivers and enhancing their satisfaction by assisting with practical caregiving tasks. A cross-sectional study. A convenience sample of 157 family caregivers was recruited from five home care service agencies in South Korea. Information about the caregivers, caregiving history, older care recipients and use of home care services was assessed. The effects of home care service use on caregiving burden and satisfaction were tested using hierarchical multiple regression analyses after adjusting for the characteristics of the caregivers, caregiving history and older care recipients. There was no significant influence of home care service use on reducing caregiving burden or on increasing caregivers' satisfaction. Although several factors were associated with caregiving burden and satisfaction, family functioning was the most unique factor to significantly affect both caregiving burden and satisfaction. Home care services might not automatically have a positive impact on caregivers' burden and satisfaction, but maintaining healthy family functioning is an important issue for family caregivers. The findings highlight the important need to reconsider ways to provide home care services and to develop nursing interventions to reinforce supportive family functioning. Practical strategies for providing home care services should be developed through a concrete assessment of the family dynamics and the needs of family caregivers. Health professionals should play a pivotal role in performing the assessment and in developing interventions to strengthen supportive family functioning

Modifiable factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients.

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Yoon, Seok-Joon; Kim, Jong-Sung; Jung, Jin-Gyu; Kim, Sung-Soo; Kim, Samyong

2014-05-01

Higher caregiver burden is associated with poor quality of life among family caregivers. However, in Korea, very few studies have examined factors associated with caregiver burden. The present study investigated factors associated with caregiver burden among family caregivers of terminally ill Korean cancer patients, particularly modifiable factors as a potential target of intervention strategies. A cross-sectional study using self-administered questionnaires was performed. Sixty-four family caregivers of terminally ill cancer patients who were admitted to the hospice-palliative care unit of a university hospital in South Korea were included. To identify caregiver burden, the Caregiver Reaction Assessment scale (CRA) was used in this study. Time spent in providing care per day, number of visits per week from other family members, family functioning, and a positive subscale, self-esteem, of the CRA were deemed as modifiable factors. Other sociodemographic, caregiving characteristics of the subjects were non-modifiable factors. Longer time spent providing care per day, fewer weekly visits from other family members, poor family functioning, and low self-esteem were considered as modifiable factors associated with caregiver burden. Low monthly income and the spouse being the family caregiver were non-modifiable factors. Our study has practical significance in that it identifies modifiable factors that can be used to devise intervention strategies. Developing and applying such intervention strategies for alleviating the factors associated with high caregiver burden could be important for improving the quality of life of both patients and their families.

Factors Associated With Higher Caregiver Burden Among Family Caregivers of Elderly Cancer Patients: A Systematic Review.

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Ge, Lixia; Mordiffi, Siti Zubaidah

Caring for elderly cancer patients may cause multidimensional burden on family caregivers. Recognition of factors associated with caregiver burden is important for providing proactive support to caregivers at risk. The aim of this study was to identify factors associated with high caregiver burden among family caregivers of elderly cancer patients. A systematic search of 7 electronic databases was conducted from database inception to October 2014. The identified studies were screened, and full text was further assessed. The quality of included studies was assessed using a checklist, and relevant data were extracted using a predeveloped data extraction form. Best-evidence synthesis model was used for data synthesis. The search yielded a total of 3339 studies, and 7 studies involving 1233 family caregivers were included after screening and full assessment of 116 studies. Moderate evidence supported that younger caregivers, solid tumors, and assistance with patient's activities of daily living were significantly associated with high caregiver burden. Eighteen factors were supported by limited evidence, and 1 was a conflicting factor. The scientific literature to date proved that caregiver burden was commonly experienced by family caregivers of elderly cancer patients. The evidence indicated that family caregivers who were at younger age, caring for solid tumor patients, and providing assistance with patient's activities of daily living reported high caregiver burden. The data provide evidence in identifying family caregivers at high risk of high caregiver burden. More high-quality studies are needed to clarify and determine the estimates of the effects of individual factors.

Private prayer among Alzheimer's caregivers: mediating burden and resiliency.

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Wilks, Scott E; Vonk, M Elizabeth

2008-01-01

This study examined whether the coping method of private prayer served as a protective factor of resiliency among a sample (N = 304) of Alzheimer's caregivers. Participants in caregiver support groups completed questionnaires that assessed a number of constructs, including caregiving burden; prayer frequency; use of private prayer as a means of coping; and perceived resiliency. The sample averaged a moderate level of burden and a great extent of prayer usage. Caregiving burden had positively affected the extent of prayer usage and negatively influenced perceived resiliency. Findings from hierarchical regression analysis showed that caregiving burden and private prayer significantly influenced variation in perceived resiliency scores. Results from a regression equation series and path analysis provided support for prayer as a mediator between burden and perceived resiliency. Implications for social work practice and education are discussed.

Caregiver burden of Mexican dementia patients: the role of dysexecutive syndrome, sleep disorders, schooling and caregiver depression.

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Rosas-Carrasco, Óscar; Guerra-Silla, María de Guadalupe; Torres-Arreola, Laura Del Pilar; García-Peña, Carmen; Escamilla-Jiménez, Cristopher Isaac; González-González, César

2014-01-01

As a result of the accelerated growth of the elderly population, reconfiguration of families and member roles, and the increase of mental disorders, it is necessary to investigate the effects of this set of factors on the caregivers of patients with dementia in Mexico. Mental disorders of individuals have a negative impact on their physical and emotional quality of life, leading to greater dependence and making the caring experience a heavy burden. Several studies (none in Mexico) have used either the characteristics of the patient or caregiver to determine the burden, but few studies have included both profiles within a single study. The objective of the present study was to analyze the characteristics of the patients and caregivers associated with caregiver burden. A multicenter study was carried out in six health institutions located in Mexico City, including 175 patients (and their caregivers) diagnosed with different types of dementia. We used the Spanish Caregiver Burden Screen. Descriptive analysis and logistic regressions were used to estimate the effect of the covariates on the caregiver burden. The results showed that patient variables have a greater impact on caregiver burden than caregiver-associated variables. Dysexecutive syndrome, sleep disorders, schooling and caregiver depression are associated with a higher level of caregiver burden. Caregiver burden is a complex phenomenon. The results of the present study showed the need to implement multifactorial interventions targeting the caregiver to reduce the burden, strengthen the skills for patient management to avoid depression, improve patient health, and diminish functional dependence and future hospitalization. © 2013 Japan Geriatrics Society.

The Effect of Cancer Patients' and Their Family Caregivers' Physical and Emotional Symptoms on Caregiver Burden.

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Johansen, Safora; Cvancarova, Milada; Ruland, Cornelia

Although there is significant evidence that the family caregivers (FCs) of cancer patients can experience significant caregiver burden and symptoms, less is known about the relationships between FCs and patient characteristics that influence caregiver burden. The purpose of this study was to examine the effect of cancer patients' and FCs' symptoms and demographic characteristics on caregiver burden at initiation of the patients' radiation treatment. Two hundred eighty-one dyads of FCs and cancer patients who received a diagnosis of breast, prostate, melanoma, lymphoma, and head and neck cancers were recruited at the beginning of the patients' radiation treatment. Measures of depression, sleep disturbance, fatigue, social support, and self-efficacy were obtained from both FCs and cancer patients. The family caregivers were also assessed for caregiver burden. Associations between patients' and caregivers' symptoms and demographic characteristics and caregiver burden were investigated using multivariate analyses. There were significant associations between caregiver burden and the patient-related variables such as self-efficacy (P = .02), sleep disturbance (P = .03), and social support (P = .04). Among FC-related variables, higher scores of depression (P caregiver burden. Being a female, either as a patient or FC, increased the likelihood of experiencing fatigue and sleep disturbance. Caregiver burden in FCs is influenced by interplay of patients' and their own symptoms and problems. These interdependencies exist from the beginning of treatment. Nurses should systematically assess the problems and symptoms of the patients and FCs and support them from the time of diagnosis to help prevent symptom development and deterioration.

Review: Burden on Family Caregivers Caring for Patients with Schizophrenia and Its Related Factors

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Imas Rafiyah

2011-01-01

Full Text Available Background: Family caregiver is the most important person who cares for patient with schizophrenia. However when care is provided for long time, he/she may experiences the burden.Purpose: The purpose was to review concept and factors related to burden on family caregivers caring for patients with schizophrenia.Method: A literatures were searched from databases: Pubmed, CINAHL, and Science Direct. Key words used to retrieve literature include caregiver burden and schizophrenia. Searching was limited in English language, full text, and the year of publication from 2000 to 2009 was used.Results: Twenty two studies were reviewed in this paper. The result showed that the caregivers caring for patients with schizophrenia experience burden. Burden was defined as a negative impact of caring for the impaired person experienced by caregiver on their activity (objective burden or feeling (subjective burden that involves emotional, physical health, social life, and financial status. Factors related to burden on family caregiver were grouped into: 1 caregiver‟s factors included age, gender, educational level, income, health status, and spent time per day, knowledge of schizophrenia, culture, and coping; 2 patient‟s factors included age, clinical symptoms, and disability in daily life; 3 environmental factors included mental health service and social support.Conclusion: Definition of burden have quite same meaning and mostly factors focus on the patient‟s symptoms, demographic factors of caregiver, and time spent per day. Most of studies cannot be generalized due to small sample used in the study and that too conducted in western countries. For further research, the correlation between burden and resources of family caregiver should be investigated particularly in eastern country.Key words: burden on family caregiver, caring, schizophrenia.

Subjective caregiver burden: validity of the 10-item short version of the Burden Scale for Family Caregivers BSFC-s.

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Graessel, Elmar; Berth, Hendrik; Lichte, Thomas; Grau, Hannes

2014-02-20

Subjective burden is a central variable describing the situation encountered by family caregivers. The 10-item short version of the Burden Scale for Family Caregivers (BSFC-short/BSFC-s) was developed to provide an economical measure of this variable. The present study examined the reliability and validity of the BSFC-s. Comprehensive data from "the IDA project" were the basis of the calculations, which included 351 dyads and examined medical data on people with dementia, interview data from their family caregivers, and health insurance data. A factor analysis was performed to explore the structure of the BSFC-s; Cronbach's alpha was used to evaluate the internal consistency of the scale. The items were analyzed to determine the item difficulty and the discriminatory power. Construct validity was tested with five hypotheses. To establish the predictive validity of the BSFC-s, predictors of institutionalization at a follow-up time of 2.5 years were analyzed (binary logistic regression). The BSFC-s score adhered to a one-factor structure. Cronbach's alpha for the complete scale was .92. A significant increase in the BSFC-s score was observed when dementia progressed, disturbing behavior occurred more frequently, care requirements increased, and when caregivers were diagnosed with depression. Caregiver burden was the second strongest predictor of institutionalization out of a total of four significant predictors. All hypotheses that referred to the construct validity were supported. The BSFC-short with its ten items is a very economical instrument for assessing the caregiver's total subjective burden in a short time frame. The BSFC-s score has predictive validity for the institutionalization of people with dementia. Therefore it is an appropriate outcome measure to evaluate caregiver interventions. The scale is available for free in 20 languages (http://www.caregiver-burden.eu). This availability facilitates the comparison of international research findings.

Caregiving burden and psychological distress in Chinese spousal caregivers: gender difference in the moderating role of positive aspects of caregiving.

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Wong, Daniel Fu Keung; Ng, Ting Kin; Zhuang, Xiao Yu

2018-05-21

This study endeavors to advance the current literature by examining the gender differences in the caregiving experiences and the stress-buffering role of positive aspects of caregiving (PAC) among Chinese spousal caregivers of frail elders in Hong Kong. Forty-nine husband caregivers and 121 wife caregivers of frail elders in Hong Kong (N = 170) responded to the Positive Aspects of Caregiving (PAC) scale, the Zarit Burden Interview (ZBI), the 21-item Depression, Anxiety, and Stress Scales (DASS-21), and demographic questions. These spousal caregivers were diverse in age, and their care receivers were diverse in terms of age and health condition. As predicted, there were significant gender differences in the moderating effects of PAC on the relationships of caregiving burden to depression, anxiety, and overall psychological distress. While PAC significantly buffered the effects of caregiving burden on depression, anxiety, and overall psychological distress for wife caregivers, the moderating effects of PAC were not significant for husband caregivers. Unexpectedly, wife caregivers reported lower PAC, higher caregiving burden, and higher psychological distress. As these findings suggest that PAC is lower but more beneficial for Chinese wife caregivers than Chinese husband caregivers, helping professionals are recommended to use strengths-based interventions that target PAC when working with Chinese wife caregivers.

Caregiver burden in amyotrophic lateral sclerosis : A systematic review

NARCIS (Netherlands)

de Wit, Jessica; Bakker, Leonhard A; van Groenestijn, Annerieke C; van den Berg, Leonard H; Schröder, Carin D; Visser-Meily, Johanna Ma; Beelen, Anita

BACKGROUND: Informal caregivers of patients with amyotrophic lateral sclerosis experience increased levels of caregiver burden as the disease progresses. Insight in the factors related to caregiver burden is needed in order to develop supportive interventions. AIM: To evaluate the evidence on

Quality of life, health status and caregiver burden in Parkinson's disease: relationship to executive functioning.

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Kudlicka, Aleksandra; Clare, Linda; Hindle, John V

2014-01-01

High-quality person-centred care for people with Parkinson's disease (PwPD) and their families relies on identifying and addressing factors that specifically impact on quality of life (QoL). Deficits in executive functions (EF) are common in Parkinson's disease, but their impact on PwPD and their caregivers is not well understood. The present study evaluated how EF contributes to QoL and health status for the PwPD and caregiver burden. Sixty-five PwPD completed measures of QoL, health status and EF, and 50 caregivers rated the EF of the PwPD and their own burden. Multiple regression analyses examined predictors of QoL (general life, health and movement disorders domains), health status and caregiver burden. Quality of life in the health and movement disorders domains was best explained by caregiver-rated EF, whereas QoL in the general life domain was best explained by level of depression. Health status was predicted by self-rated EF, with an objective EF measure also included in the regression model. Caregiver burden was best explained by caregiver-rated EF and disease severity, with general cognition and other factors also included in the regression model. Executive functions-related behavioural problems may contribute to QoL and health status in PwPD and affect caregiver burden. The findings support the view that the concepts of subjective QoL and self-assessed health status are only partially related and should not be seen as identical. Adequate strategies to reduce the impact of EF deficits are needed as this may have the potential to improve QoL in PwPD. Copyright © 2013 John Wiley & Sons, Ltd.

A multinational review of recent trends and reports in dementia caregiver burden.

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Torti, Frank M; Gwyther, Lisa P; Reed, Shelby D; Friedman, Joëlle Y; Schulman, Kevin A

2004-01-01

This systematic review of the literature focuses on the influence of ethnic, cultural, and geographic factors on the caregivers of patients with dementia. In particular, we explore the impact of cultural expectations on five important questions: 1) Do the characteristics of dementia affect caregiver burden? 2) Do characteristics of the caregiver independently predict burden? 3) Does the caregiver affect patient outcomes? 4) Does support or intervention for caregiver result in reduced caregiver burden or improved patient outcomes? 5) Finally, do patient interventions result in reduced caregiver burden or improved patient outcomes? Our findings suggest that noncognitive, behavioral disturbances of patients with dementia result in increased caregiver burden and that female caregivers bear a particularly heavy burden across cultures, particularly in Asian societies. Caregiver burden influences time to medical presentation of patients with dementia, patient condition at presentation, and patient institutionalization. Moreover, interventions designed to reduce caregiver burden have been largely, although not universally, unsuccessful. Pharmacological treatments for symptoms of dementia were found to be beneficial in reducing caregiver burden. The consistency of findings across studies, geographic regions, cultural differences, and heathcare delivery systems is striking. Yet, there are critical differences in cultural expectations and social resources. Future interventions to reduce caregiver burden must consider these differences, identify patients and caregivers at greatest risk, and develop targeted programs that combine aspects of a number of interventional strategies.

Caregiver burden and its determinants among the family members of patients with dementia in Iran

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Ibrahim Abdollahpour

2012-01-01

Full Text Available Background: "Caregiver Burden" is actually an expression addressing the adverse consequences of the care provided to the patients′ with dementia. Review of the previous studies reveals a higher rate of depression and anxiety among the caregivers as compared to the general population. This study has been designed to evaluate the caregiver burden and then the factors influencing it among caregivers of patients with dementia in Iran. Methods: In this cross-sectional study, 153 patients and their caregivers registered in the Memory Clinic in Roozbeh Hospital and Iranian Alzheimer Association (IAA were included. Data collection scales were Iranian Version of Caregiver Burden, Global Deterioration scale and Barthel index. Multiple linear regression model was applied to determine the factors influencing the caregiver burden. Results: Out of the 153 patients, 90 were male. The mean age calculated for the patients and the caregivers was 77.1 and 53, respectively. The mean of caregiver burden was 55.2. Three variables, gender (P<0.01, education of the patient (P<0.005 for illiterate patients, and the patient′s dependence on the caregiver for his/her daily tasks (P<0.000 were correlated with a high level of burden on the caregiver. The recommended model explains 0.664% of the variance of the outcome variable. Conclusion: Presence of either moderate or higher levels of burden (58-116 in more than 50% of the caregivers of these patients′ highlights the need for more attention from health policy makers in Iran. Promoting the level of caregivers′ quality of life along with enabling the patients in performing their daily tasks in order to reduce the imposed burden on caregivers′ is recommended.

Primary caregivers of schizophrenia outpatients: burden and predictor variables.

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Grandón, Pamela; Jenaro, Cristina; Lemos, Serafín

2008-04-15

This article explores family burden in relation to relatives' coping strategies and social networks, as well as in relation to the patients' severity of positive and negative symptoms. Data on the severity of symptoms (Positive and Negative Syndrome Scale for Schizophrenia [PANSS]), social functioning (Social Functioning Scale [SFS]), caregivers burden (Interview on Objective and Subjective Family Burden or Entrevista de Carga Familiar Objetiva y Subjetiva [ECFOS]), coping skills (Family Coping Questionnaire [FCQ]), and social support (Social Network Questionnaire [SNQ]) were gathered from a randomized sample of 101 Chilean outpatients and their primary caregivers, mostly mothers. Low levels of burden were typically found, with the exception of moderate levels on general concerns for the ill relative. A hierarchical regression analysis with four blocks showed that clinical characteristics, such as higher frequency of relapses, more positive symptoms and lower independence-performance, together with lower self-control attributed to the patient, decrease in social interests, and less affective support, predict burden. The results support the relevance of psychoeducational interventions where families' needs are addressed.

Caregiver burden and nonachievement of healthy lifestyle behaviors among family caregivers of cardiovascular disease patients.

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Mochari-Greenberger, Heidi; Mosca, Lori

2012-01-01

To determine whether caregiver burdens are associated with lifestyle behaviors 1 year following the hospitalization of a family member with cardiovascular disease (CVD). Prospective follow-up study of National Heart Lung and Blood Institute sponsored Family Intervention Trial for Heart Health participants. Hospital-based recruitment/baseline visit with 1-year follow-up. Family members of hospitalized CVD patients (N  =  423; 67% female; 36% racial/ethnic minority; mean age 49 years). Systematic evaluation at 1 year to determine heart-healthy diet (defined as caregiver burdens (five domains: employment, financial, physical, social, and time; Caregiver Strain Questionnaire). Logistic regression adjusted for covariates. Heart-healthy diet was less frequent among caregivers citing feeling overwhelmed (odds ratio [OR]  =  .50; 95% confidence interval [CI]  =  .26-.97), sleep disturbance (OR  =  .51; 95% CI  =  .27-.96), financial strain (OR  =  .41; 95% CI  =  .20-.86), upsetting behavior (OR  =  .48; 95% CI  =  .25-.92), and/or time demands (OR  =  .47; 95% CI  =  .26-.85) as burdens. Physical activity was less frequent among caregivers reporting financial strain (OR  =  .32; 95% CI  =  .13-.81) or upsetting patient behavior (OR  =  .33; 95% CI  =  .15-.76) as burdens. The most commonly cited caregiver burdens included changes in personal plans (39%), time demands (38%), and sleep disturbance (30%). Caregiver burdens were associated with nonachievement of heart-healthy diet and physical activity behaviors among family caregivers 1 year after patient discharge. When developing heart-health promotion interventions, caregiver burden should be considered as a possible barrier to prevention among family members of CVD patients.

Trajectories of caregiver burden in families of adult cystic fibrosis patients.

Science.gov (United States)

Wojtaszczyk, Ann; Glajchen, Myra; Portenoy, Russell K; Berdella, Maria; Walker, Patricia; Barrett, Malcolm; Chen, Jack; Plachta, Amy; Balzano, Julie; Fresenius, Ashley; Wilder, Kenya; Langfelder-Schwind, Elinor; Dhingra, Lara

2017-10-17

Little is known about the experience of family caregivers of adults with cystic fibrosis (CF). This information is important for the identification of caregivers at risk for burden. This was a longitudinal analysis of survey data obtained from caregivers of adult CF patients participating in an early intervention palliative care trial. Caregivers completed the validated Brief Assessment Scale for Caregivers (BASC) repeatedly over a 28-month period. Mixed-effects modeling evaluated multivariate associations with positive and negative caregiver perceptions over time. Of the 54 caregivers, 47.9% were spouses. The mean age was 50.9 years (SD = 13.2); 72.2% were women; 75.9% were married; and 63.0% were employed. At baseline, the BASC revealed large variations in positive and negative perceptions of caregiving. Although average scores over time were unchanging, variation was greater across caregivers than within caregivers (0.49 vs. 0.27, respectively). At baseline, the positive impact of caregiving in the sample was higher than the negative impact. Multivariate analysis revealed that patients' baseline pulmonary function and their full-time employment status predicted caregiver burden over time. Caregivers of CF patients varied in their positive and negative caregiving experiences, although burden levels in individual caregivers were stable over time. When the disease was advanced, caregivers of CF patients experienced more overall burden but also more positive impact. This suggests that the role of caregivers may become more meaningful as disease severity worsens. In addition, full-time patient employment was associated with lower caregiver burden regardless of disease severity. This suggests that burden in CF caregivers may be predicted by financial strain or benefits conferred by patient employment. These associations require further investigation to determine whether highly burdened caregivers can be identified and assisted using tailored interventions.

Psychometric properties of the Zarit Caregiver Burden Interview administered to caregivers to patients with Duchenne muscular dystrophy: a Rasch analysis.

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Landfeldt, Erik; Mayhew, Anna; Straub, Volker; Bushby, Katharine; Lochmüller, Hanns; Lindgren, Peter

2017-12-18

To explore the psychometric properties of the full 22-item English (UK and US) version of the Zarit Caregiver Burden Interview administered to caregivers to patients with Duchenne muscular dystrophy. Caregivers to patients with Duchenne muscular dystrophy from the United Kingdom and the United States, recruited through the TREAT-NMD network, completed the Zarit Caregiver Burden Interview online. The psychometric properties of the Zarit Caregiver Burden Interview were examined using Rasch analysis. A total of 475 caregivers completed the Zarit Caregiver Burden Interview. Model misfit was identified for 9 of 22 items (mean item fit residual 0.061, SD: 2.736) and 13 of 22 items displayed disordered thresholds. The overall item-trait interaction chi-square value was 499 (198 degrees of freedom, p Interview fails to fully operationalize a quantitative conceptualization of caregiver burden among caregivers to patients with Duchenne muscular dystrophy from the United Kingdom and the United States. Further research is needed to understand the psychometric properties of the Zarit Caregiver Burden Interview in other populations and settings. Implications for Rehabilitation Duchenne muscular dystrophy is a terminal disease characterized by progressive muscle degeneration resulting in substantial disability and a significant burden on family caregivers. The Zarit Caregiver Burden Interview is one of the most widely applied measures of caregiver burden. Our Rasch analysis suggests that the Zarit Caregiver Burden Interview is not fit for purpose to measure burden in UK and US caregivers to patients with Duchenne muscular dystrophy. Clinicians and decision-makers should interpret Zarit Caregiver Burden Interview data from these populations with caution.

"Mad or bad?": burden on caregivers of patients with personality disorders.

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Bauer, Rita; Döring, Antje; Schmidt, Tanja; Spießl, Hermann

2012-12-01

The burden on caregivers of patients with personality disorders is often greatly underestimated or completely disregarded. Possibilities for caregiver support have rarely been assessed. Thirty interviews were conducted with caregivers of such patients to assess illness-related burden. Responses were analyzed with a mixed method of qualitative and quantitative analysis in a sequential design. Patient and caregiver data, including sociodemographic and disease-related variables, were evaluated with regression analysis and regression trees. Caregiver statements (n = 404) were summarized into 44 global statements. The most frequent global statements were worries about the burden on other family members (70.0%), poor cooperation with clinical centers and other institutions (60.0%), financial burden (56.7%), worry about the patient's future (53.3%), and dissatisfaction with the patient's treatment and rehabilitation (53.3%). Linear regression and regression tree analysis identified predictors for more burdened caregivers. Caregivers of patients with personality disorders experience a variety of burdens, some disorder specific. Yet these caregivers often receive little attention or support.

Factors Underpinning Caregiver Burden in Frontotemporal Dementia Differ in Spouses and their Children

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Kaizik, Cassandra; Caga, Jashelle; Camino, Julieta; O’Connor, Claire M.; McKinnon, Colleen; Oyebode, Jan R.; Piguet, Olivier; Hodges, John R.; Mioshi, Eneida

2017-01-01

The objectives of this observational study were to (1) compare spousal and child caregiver burden; (2) compare co-resident and live-out child caregiver burden; and (3) investigate factors influencing spousal and child caregiver burden. Data was collected from 90 caregivers of people with frontotemporal degeneration (FTD) recruited from the Frontotemporal Dementia Research Group (Frontier) at Neuroscience Research, Australia. Of this caregiver group, 43 were spousal caregivers and 47 were child caregivers. Caregiver burden and emotional state were evaluated using the short Zarit Burden Interview and the short version of the Depression, Anxiety and Stress Scale-21. The Social Network Index was applied to ascertain the social network of the caregiver, while the Intimate Bond Measure was used to evaluate the current quality of the relationship between the caregiver and the person with dementia. The Frontotemporal Dementia Rating Scale was used to assess severity of dementia. Spousal and child caregivers experienced similar levels of burden, depression, anxiety, and stress, regardless of disease severity. Co-resident child caregivers had smaller social networks and greater burden than live-out caregivers. Dementia severity was key in spousal caregiver burden, whereas caregiver depression was most important in child caregiver burden. Child and spousal caregivers of individuals with FTD share similar levels of burden, influenced by different factors. Future interventions need to account for these differences. PMID:28106550

Dependence and caregiver burden in Alzheimer's disease and mild cognitive impairment.

LENUS (Irish Health Repository)

Gallagher, Damien

2011-03-01

The dependence scale has been designed to be sensitive to the overall care needs of the patient and is considered distinct from standard measures of functional ability in this regard. Little is known regarding the relationship between patient dependence and caregiver burden. We recruited 100 patients with Alzheimer\\'s disease or mild cognitive impairment and their caregivers through a memory clinic. Patient function, dependence, hours of care, cognition, neuropsychiatric symptoms, and caregiver burden were assessed. Dependence was significantly correlated with caregiver burden. Functional decline and dependence were most predictive of caregiver burden in patients with mild impairment while behavioral symptoms were most predictive in patients with moderate to severe disease. The dependence scale demonstrated good utility as a predictor of caregiver burden. Interventions to reduce caregiver burden should address patient dependence, functional decline, and behavioral symptoms while successful management of the latter becomes more critical with disease progression.

Burden of informal caregiving for stroke patients: Identification of caregivers at risk of adverse health effects

NARCIS (Netherlands)

Exel, N.J.A. van; Koopmanschap, M.A.; Berg, B. van den; Brouwer, W.B.F.; Bos, G.A.M. van den

2005-01-01

Background: We assessed the objective and subjective burden of caregiving for stroke patients and investigated which characteristics of the patient, the informal caregiver and the objective burden contribute most to subjective burden and to the condition of feeling substantially burdened. Methods:

Symptoms of depression in non-routine caregivers: the role of caregiver strain and burden.

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Phillips, Anna C; Gallagher, Stephen; Hunt, Kate; Der, Geoff; Carroll, Douglas

2009-11-01

The origins and persistence of psychological morbidity in caregivers are not fully understood. The present analysis examined the relationship between the strain and burden of caregiving and depression and anxiety in a large community sample. Social support and sleep quality were investigated as potential mediators. Cross-sectional and prospective observational study. Individuals caring for someone other than their own child (N=393) were identified from a population of 2,079. Caregiving strain and burden, social support, and sleep quality were assessed. Participants completed the hospital anxiety and depression scale at the same time and 5 years later. Caregiving strain and burden were associated with depression and anxiety symptoms cross-sectionally, and with a worsening of symptoms 5 years later. Sleep quality appeared to mediate the cross-sectional relationships. The demands of caregiving and associated sleep disruption contribute to symptoms of depression and anxiety in caregivers.

[The current perspectives regarding the burden on mental health caregivers].

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Cardoso, Lucilene; Vieira, Mariana Verderoce; Ricci, Maira Aparecida Malagutti; Mazza, Rafael Severio

2012-04-01

A systematic literature review was performed regarding the burden on mental health caregivers. The studies were selected from the Virtual Health Library - Biblioteca Virtual de Saúde (BVS), using the keyword caregiver burden. The main criteria for this study were: full-text articles published between 2000 and 2010, in Portuguese, English or Spanish; indexed on the BVS databases; which investigated the burden of mental health caregivers, and had caregivers as the main subject. The analysis was performed considering the following: title, year of publication, objectives, methodological approach, instruments and main results. The analysis of 114 full-text articles showed the predominant objectives were the burden on informal caregivers and the validation of psychometric scales, particularly the Zarit Scale. Some studies showed an association between high levels of burden, feelings of guilt and depressive symptoms. On the other hand, psycho-educational interventions were indicated as having a positive impact. This theme has a growing scientific interest and there is a need for deeper studies addressing formal caregivers.

Identifying Sociodemographic Characteristics Associated With Burden Among Caregivers of the Urban Homebound

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Ania Wajnberg MD

2016-09-01

Full Text Available Limited research has explored whether the burden associated with caring for homebound patients varies across racial groups or by relationship status. We examined these variations for this vulnerable population. Patients self-identified informal caregivers and caregiver burden/depression were assessed using the Zarit Caregiver Burden Scale and the Center for Epidemiologic Studies–Depression scale (CES-D. Forty-nine informal caregivers completed the interview. Mean age was 58 ( SD = 14, 78% were female, 37% Black, 35% Hispanic, and 46% had completed high school. Over 60% of caregivers had moderate or severe caregiver burden and 30% had significant depression. White caregivers had greater burden than Black and Hispanic caregivers ( p = .02. Mean caregiver burden was higher among spouse/partner caregivers, versus those who identified as children or other family or friends ( p = .004. Additional research is needed to better understand the experience of racial and ethnic minorities and spouses in providing informal care to homebound adults.

Predictor of increase in caregiver burden for disabled elderly at home.

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Okamoto, Kazushi; Harasawa, Yuko

2009-01-01

In order to classify the caregivers at high risk of increase in their burden early, linear discriminant analysis was performed to obtain an effective discriminant model for differentiation of the presence or absence of increase in caregiver burden. The data obtained by self-administered questionnaire from 193 caregivers of frail elderly from January to February of 2005 were used. The discriminant analysis yielded a statistically significant function explaining 35.0% (Rc=0.59; d.f.=6; p=0.0001). The configuration indicated that the psychological predictors of change in caregiver burden with much perceived stress (1.47), high caregiver burden at baseline (1.28), emotional control (0.75), effort to achieve (-0.28), symptomatic depression (0.20) and "ikigai" (purpose in life) (0.18) made statistically significant contributions to the differentiation between no increase and increase in caregiver burden. The discriminant function showed a sensitivity of 86% and specificity of 81%, and successfully classified 83% of the caregivers. The function at baseline is a simple and useful method for screening of an increase in caregiver burden among caregivers for the frail elderly at home.

The predictive factors for perceived social support among cancer patients and caregiver burden of their family caregivers in Turkish population.

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Oven Ustaalioglu, Basak; Acar, Ezgi; Caliskan, Mecit

2018-03-01

We aimed to identify the predictive factors for the perceived family social support among cancer patients and caregiver burden of their family caregivers. Participants were 302 cancer patients and their family caregivers. Family social support scale was used for cancer patients, burden interview was used for family caregivers.All subjects also completed Beck depression invantery. The related socio-demographical factors with perceived social support (PSS) and caregiver burden were evaluated by correlation analysis. To find independent factors predicting caregiver burden and PSS, logistic regression analysis were conducted. Depression scores was higher among patients than their family caregivers (12.5 vs. 8). PSS was lower in depressed patients (p Family caregiver burden were also higher in depressive groups (p family caregiver role was negatively correlated (p caregiver burden. Presence of depression was the independent predictor for both, lower PSS for patients and higher burden for caregivers. The results of this study is noteworthy because it may help for planning any supportive care program not only for patients but together with their caregiver at the same time during chemotherapy period in Turkish population.

Caregiver burden and coping strategies in caregivers of patients with Alzheimer’s disease

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Iavarone A

2014-07-01

Full Text Available Alessandro Iavarone,1,2 Antonio Rosario Ziello,3,4 Francesca Pastore,3 Angiola Maria Fasanaro,3 Carla Poderico5 1Neurological and Stroke Unit, CTO Hospital, 2Italian Association on Alzheimer's Disease (AIMA, 3Memory Clinic, Neurological Unit, AORN Cardarelli Hospital, Naples, Italy; 4Clinical Research, Telemedicine and Telepharmacy Centre, University of Camerino, Camerino, Italy; 5Department of Psychology, Second University of Naples, Caserta, Italy Background: Alzheimer’s disease (AD causes considerable distress in caregivers who are continuously required to deal with requests from patients. Coping strategies play a fundamental role in modulating the psychologic impact of the disease, although their role is still debated. The present study aims to evaluate the burden and anxiety experienced by caregivers, the effectiveness of adopted coping strategies, and their relationships with burden and anxiety. Methods: Eighty-six caregivers received the Caregiver Burden Inventory (CBI and the ­State-Trait Anxiety Inventory (STAI Y-1 and Y-2. The coping strategies were assessed by means of the Coping Inventory for Stressful Situations (CISS, according to the model proposed by Endler and Parker in 1990.Results: The CBI scores (overall and single sections were extremely high and correlated with dementia severity. Women, as well as older caregivers, showed higher scores. The trait anxiety (STAI-Y-2 correlated with the CBI overall score. The CISS showed that caregivers mainly adopted task-focused strategies. Women mainly adopted emotion-focused strategies and this style was related to a higher level of distress. Conclusion: AD is associated with high distress among caregivers. The burden strongly correlates with dementia severity and is higher in women and in elderly subjects. Chronic anxiety affects caregivers who mainly rely on emotion-oriented coping strategies. The findings suggest providing support to families of patients with AD through tailored

Caregiver burden in Alzheimer-type dementia and psychosis: A comparative study from India.

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Sinha, P; Desai, N G; Prakash, O; Kushwaha, S; Tripathi, C B

2017-04-01

Caregiver burden in dementia is an important area of research. Providing care for a relative can be a potent source of chronic stress and can have deleterious consequences for both the physical and emotional health of caregivers. This study aims to evaluate the burden of care in caregivers of patients with Alzheimer-type dementia and compare it with elderly psychosis; and to also study the factors that influence burden of care in Alzheimer's dementia. Thirty-two caregiver-patient dyads of Alzheimer-type dementia were compared with thirty-two caregiver-patient dyads of psychosis. Cognitive assessment, abilities to perform activities of daily living and severity of dementia was assessed in the patients. Zarit Burden Interview was used to study the caregiver burden in both groups. The mean burden score in dementia caregivers was high at 47.7, whereas the mean burden score for elderly psychosis caregivers was lesser at 33.6, and this difference in mean burden scores was found to be statistically significant. Spouses had the highest mean burden scores of 53.48. Caregiver burden in dementia was positively correlated with cognitive impairment and inability to carry out ADLs. Presence of psychological distress in caregivers was also an indicator for greater caregiver burden in dementia. The study revealed that dementia carries a greater caregiver burden when compared with elderly patients with psychosis. Innovative interventions are needed to remove burden from caregiving, making it a meaningful practice integral to the Indian society. Copyright © 2017 Elsevier B.V. All rights reserved.

Social support and subjective burden in caregivers of adults and older adults: A meta-analysis.

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Del-Pino-Casado, Rafael; Frías-Osuna, Antonio; Palomino-Moral, Pedro A; Ruzafa-Martínez, María; Ramos-Morcillo, Antonio J

2018-01-01

Despite the generally accepted belief that social support improves caregiver adjustment in general and subjective burden in particular, the literature shows mixed findings, and a recent review concluded that the predictive strength of caregiver social support in determining caregiver burden is less evident, due to the conceptual diversity of this determinant. The purpose of this review is to analyse the relationship of perceived and received social support with subjective burden among informal caregivers of an adult or older adult. A systematic search was carried out up to September 2017 in the following databases: MEDLINE (PubMed), CINAHL, EMBASE, PsycINFO), Scopus and ISI Proceedings, and a meta-analysis was performed with the results of the selected and included studies. Fifty-six studies were included in the meta-analysis, which provided 46 independent comparisons for perceived support and 16 for received support. Most of these studies were cross-sectional. There was a moderate, negative association of perceived social support on subjective burden (r = -0.36; CI 95% = -0.40, -0.32) and a very small, negative association of received support on subjective burden (r = -0.05; CI 95% = -0.095, -0.001). 1) perceived and received support are not redundant constructs, 2) the relationships between social support and subjective burden depend on whether the social support is measured as perceived or received, 3) the relationship of perceived social support with subjective burden has a bigger effect size than that of received social support, the relation between received support and subjective burden being clinically irrelevant, 4) perceived social support may be a good predictor of subjective burden. Our findings broadly support interventions promoting social support in caregivers to prevent or alleviate subjective burden, and specifically, to intervene on the promotion of perceived social support more than on the promotion of received social support when preventing or

[Burden, empathy, and resilience in dependent people caregivers].

Science.gov (United States)

Navarro-Abal, Yolanda; López-López, María José; Climent-Rodríguez, José Antonio; Gómez-Salgado, Juan

2018-02-10

To analyse the differences in perceived burden between family caregivers who are users of patient associations and those who are not; to assess the relationship between burden, resilience, and empathy levels. Retrospective ex post facto study of two groups, one of them quasi control. The sample was composed of 155 informal caregivers (28 men and 155 women); 109 of them were users of patient relatives' associations and 46 were not. Both descriptive and bivariate comparative analyses were carried out. Caregivers who were members of patient associations showed lower burden and empathy levels than those who were not. This highlighted that the higher their level of perceived burden, the lower their level of resilience. Belonging to carers' associations results in a lower level of perceived burden and a lower risk of developing compassion fatigue syndrome. Copyright © 2018 SESPAS. Publicado por Elsevier España, S.L.U. All rights reserved.

Self-reported burden among caregivers of patients with multiple sclerosis.

Science.gov (United States)

Gupta, Shaloo; Goren, Amir; Phillips, Amy L; Stewart, Michelle

2012-01-01

Multiple sclerosis (MS) and Alzheimer's disease (AD) are chronic and progressive diseases that may impose a significant burden on caregivers and patients' immediate families. Extensive research shows MS and AD caregiver burden on physical and mental health, but no direct comparisons between MS and AD caregivers have been reported in the literature. The objective of this study was to examine the extent of MS caregiver burden compared with that of noncaregivers and AD caregivers. Data were obtained from the 2009 National Health and Wellness Survey administered online to a US representative adult sample (N = 75,000). Respondents reported health status, quality of life, work productivity, health-care utilization, and caregiver status. Multivariable regressions, adjusting for key characteristics (eg, age, gender, marital status, depression), were conducted to explore differences between MS caregivers (n = 215) and noncaregivers (n = 69,224) and between MS caregivers and AD caregivers (n = 1341). The results indicated that MS caregivers had significantly greater activity impairment (P = .01), poorer mental (P = .015) and physical (P = .002) health status, lower health utility scores (P = .002), and more traditional health-care provider visits (P productivity differences were not observed across groups, possibly owing to fewer employed respondents. Thus, in this study, MS caregivers had significantly more burden than noncaregivers, and for some measures, even AD caregivers. The results reveal the hidden toll on those providing care for MS patients and highlight the need for health-care providers to recognize their burden so that appropriate measures can be implemented.

Caregiver Burden Among Caregivers of Individuals With Severe Mental Illness: Testing the Moderation and Mediation Models of Resilience.

Science.gov (United States)

Mulud, Zamzaliza Abdul; McCarthy, Geraldine

2017-02-01

The association between the socio-demographic characteristics of caregivers, such as gender and caregiver burden, is well documented; however, the process underlying this relationship is poorly understood. Based on the stress process model, we designed a cross-sectional study to examine the mediating and moderating effect of resilience on the relationship between gender and caregiver burden. Caregivers of individuals with severe mental illness (n=201) were recruited in two psychiatric outpatient clinics in Malaysia. The relationship between the gender of the caregiver and caregiver burden was mediated by resilience, thus supporting the stress process model. The findings from the present research contribute to the growing evidence of the interaction between socio-demographic variables of caregivers and resilience, and caregiver burden. Copyright © 2016 Elsevier Inc. All rights reserved.

Psychometrics of the Zarit Burden Interview in Caregivers of Patients With Heart Failure.

Science.gov (United States)

Al-Rawashdeh, Sami Y; Lennie, Terry A; Chung, Misook L

Identification of family caregivers who are burdened by the caregiving experience is vital to prevention of poor outcomes associated with caregiving. The Zarit Burden Interview (ZBI), a well-known measure of caregiving burden in caregivers of patients with dementia, has been used without being validated in caregivers of patients with heart failure (HF). The purpose of this study is to examine the reliability and validity of the ZBI in caregivers of patients with HF. A total of 124 primary caregivers of patients with HF completed survey questionnaires. Caregiving burden was measured by the ZBI. Reliability was examined using Cronbach's α and item-total/item-item correlations. Convergent validity was examined using correlations with the Oberst Caregiving Burden Scale. Construct validity was demonstrated by exploratory factor analysis and known hypothesis testing (ie, the hypothesis of the association between caregiving burden and depressive symptoms). Cronbach's α for the ZBI was .921. The ZBI had good item-total (r = 0.395-0.764) and item-item (mean r = 0.365) correlations. Significant correlations between the ZBI and the Oberst Caregiving Burden Scale (r = 0.466 for the caregiving time subscale and 0.583 for the caregiving task difficulty subscale; P < .001 for both) supported convergent validity. Four factors were identified (ie, consequences of caregiving, patient's dependence, exhaustion with caregiving and uncertainty, and guilt and fear for the patient's future) using factor analysis, which are consistent with previous studies. Caregivers with high burden scores had significantly higher depressive symptoms than did caregivers with lower burden scores (7.0 ± 6.8 vs 3.1 ± 4.3; P < .01). The findings provide evidence that the ZBI is a reliable and valid measure for assessing burden in caregivers of patients with HF.

Caregiver burden in Danish family members of patients with severe brain injury

DEFF Research Database (Denmark)

Doser, Karoline; Norup, Anne

2016-01-01

OBJECTIVE: To investigate caregiver burden and factors associated with caregiver burden among family members of patients with severe brain injury in the chronic phase. Additionally, the study aimed at investigating differences in burden between parents and spouses. METHODS: Forty-four Danish...... caregivers of patients with severe brain injury were contacted 3-6 years post-injury and asked to complete a measure of caregiver burden. RESULTS: Medium, high and low levels of burden were observed in 45%, 16% and 39% of family members, respectively. Higher burden was seen in caregivers of patients...... with more severe injuries, who spent more time on caregiving and reported more unmet needs. Overall, spouses spent significantly more time taking care of their family member than parents and reported higher levels of burden. CONCLUSIONS: The findings emphasized the continuing consequences of brain injury...

Patients' self-perceived burden, caregivers' burden and quality of life for amyotrophic lateral sclerosis patients: a cross-sectional study.

Science.gov (United States)

Geng, Dan; Ou, RuWei; Miao, XiaoHui; Zhao, LiHong; Wei, QianQian; Chen, XuePing; Liang, Yan; Shang, HuiFang; Yang, Rong

2017-10-01

This study surveys the quality of life of amyotrophic lateral sclerosis patients and the factors associated with amyotrophic lateral sclerosis patients' self-perceived burden and their caregivers' burden. Burdens of patients with amyotrophic lateral sclerosis and their caregivers in Chinese population are largely unknown. A cross-sectional study was conducted among 81 pairs of amyotrophic lateral sclerosis patients and their caregivers. Amyotrophic lateral sclerosis patients' self-perceived burden and caregivers' burden were assessed by the Self-Perceived Burden Scale and Zarit-Burden Interview, respectively. Quality of life of amyotrophic lateral sclerosis patients was measured using the World Health Organization Quality of Life-Bref. The amyotrophic lateral sclerosis Functional Rating Scale-Revised questionnaire was used to estimate patients' physical function. Both patients and caregivers reported a mild to moderate burden. The World Health Organization quality of life-Bref scores were decreased in respondents with lower amyotrophic lateral sclerosis Functional Rating Scale-Revised, higher Self-Perceived Burden Scale and higher Zarit-Burden Interview scores. Self-Perceived Burden Scale scores were associated with patients' knowledge of amyotrophic lateral sclerosis, respiratory function and female sex. Zarit-Burden Interview scores were associated with caregivers' age, patients' motor function and out-of-pocket payment. With increase in amyotrophic lateral sclerosis patients' self-perceived burden and caregivers' burden, quality of life of amyotrophic lateral sclerosis patients decreased. Female patients, who had known more about the disease, and those with severe respiratory dysfunction were subject to higher self-perceived burden. Older caregivers and caregivers of patients with severe motor dysfunction and more out-of-pocket payment experienced more care burdens. Our study suggests that paying more attention to female amyotrophic lateral sclerosis patients

Caregiver burden among relatives of patients with schizophrenia in ...

African Journals Online (AJOL)

both patients and their caregivers.1,2 Caregiver burden in mental illness can either be ... with chronic mental illness.9 Consequently, there is a need to study the burden of ..... References. 1. Kung W. The illness, stigma, culture or immigration?

Caregiver burden in Alzheimer's disease patients in Spain.

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Peña-Longobardo, Luz María; Oliva-Moreno, Juan

2015-01-01

Alzheimer's disease constitutes one of the leading causes of burden of disease, and it is the third leading disease in terms of economic and social costs. To analyze the burden and problems borne by informal caregivers of patients who suffer from Alzheimer's disease in Spain. We used the Survey on Disabilities, Autonomy and Dependency to obtain information on the characteristics of disabled people with Alzheimer's disease and the individuals who provide them with personal care. Additionally, statistical multivariate analyses using probit models were performed to analyze the burden placed on caregivers in terms of health, professional, and leisure/social aspects. 46% of informal caregivers suffered from health-related problems as a result of providing care, 90% had leisure-related problems, and 75% of caregivers under 65 years old admitted to suffering from problems related to their professional lives. The probability of a problem arising for an informal caregiver was positively associated with the degree of dependency of the person cared for. In the case of caring for a greatly dependent person, the probability of suffering from health-related problems was 22% higher, the probability of professional problems was 18% higher, and there was a 10% greater probability of suffering from leisure-related problems compared to non-dependents. The results show a part of the large hidden cost for society in terms of problems related to the burden lessened by the caregivers. This information should be a useful tool for designing policies focused toward supporting caregivers and improving their welfare.

Family caregiver burden in mental illnesses: The case of affective disorders and schizophrenia - a qualitative exploratory study.

Science.gov (United States)

von Kardorff, Ernst; Soltaninejad, Ali; Kamali, Mohammad; Eslami Shahrbabaki, Mahin

2016-01-01

Caregivers of people with mental illnesses often experience a wide range of burdens. Although many studies have confirmed burdens among family caregivers of mentally ill relatives in general, specific knowledge regarding the concrete everyday hassle and existential sorrows from the caregiverś subjective reasoning perspective is lacking. Furthermore, there is little evidence on the possible different effects of affective disorders and schizophrenia on the quality of burden; this is also true with regard to the role of cultural traditions and lay beliefs. The aim of this study was to explore the specific burdens experienced by caregivers of patients with schizophrenia and affective disorders. A qualitative study was conducted by semi-structured interviews with 45 caregivers of patients with schizophrenia and affective disorders. Data were analysed by qualitative content analysis. Eleven encumbering themes resulted from the interviews including incertitude, unawareness, emotional burden, stigma and blame, financial burden, physical burden, restriction in routine, disruption in routine, dissatisfaction with family, relatives, and acquaintances, troubles with patients' adherence to medication, and problems with health services and governmental support. Caring for a person with mental illness affects caregivers emotionally, financially, physically, and it elicits some restrictions in their routine (daily hassles). Finally, it causes conflicts in family relationships. Despite some differences regarding perceived burden among caregivers of schizophrenia and affective disorders, a common pattern of burden could be identified. Thus, authorities should provide adequate financial, educational, and psychosocial supports for caregivers of mental illnesses.

Grandparent Caregiving and Psychological Well-Being Among Chinese American Older Adults-The Roles of Caregiving Burden and Pressure.

Science.gov (United States)

Xu, Ling; Tang, Fengyan; Li, Lydia W; Dong, Xin Qi

2017-07-01

Though ample research on grandparent caregiving and psychological well-being outcomes exist in Western literature, little attention has been focused on Chinese American grandparents. Based on role enhancement and role strain theories, this study examined grandparent caregiving and psychological well-being among Chinese American older adults and tested whether caregiving burden or pressure from adult children moderated such association. We used the data from the Population Study of ChINese Elderly in Chicago (PINE), a population-based survey of community-dwelling Chinese older adults in the Greater Chicago area. Grandparents with grandchildren younger than 16 years old were selected for present study (N = 2,775). Negative binominal regression and logistic regression models were used to test the relationships of grandparent caregiving time and psychological well-being measured by depressive symptoms and quality of life. Grandparents reported an average of 11.96 hours a week for caring for grandchildren. Caregiving time had a significantly negative association with depressive symptoms, but not with quality of life. The association between grandparent caregiving and depressive symptoms was moderated by the perception of caregiving burden. No moderating effect of caregiving pressure from adult children was found. More time spending on grandparent caregiving is generally beneficial to Chinese American grandparents' psychological well-being, thus supporting role enhancement theory. However, this association depends on whether this experience is a burden to the grandparents, therefore role strain theory is also supported. Policies and programs are discussed to address the grandparenting experience in the Chinese American older adults. © The Author 2017. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

A COMPARATIVE STUDY OF CAREGIVER BURDEN IN CANCER CERVIX AND CANCER BREAST ILLNESSES

Directory of Open Access Journals (Sweden)

Srinivasagopalan, Nappinnai, Solayappan

2015-07-01

Full Text Available Background: Caregivers of individuals suffering from cancer illnesses are at risk of having subjected to mental health consequences. There is a paucity of data comparing the caregiver burden of cancer breast and cancer cervix patients. Aim: The aim of the present study is to compare the caregiver burden of cancer breast and cancer cervix patients. To study the association of caregiver burden with demographic factors like age, gender, duration of caregiving etc. Materials & Methods: This Cross sectional study is performed on the key relatives of patients of 31 cancer cervix and 31 cancer breast patients. Burden assessment schedule was used. Results: Our findings suggest burden is more in male caregivers of breast cancer patients. It is not so in caregivers of cancer cervix patients. Whenever the caregiver is closely related to the patients the burden is high in both groups. Whenever the burden scores were high the depression scores were also high. Treatment modalities as a whole correlates with burden scores in caregivers of breast cancer patients but not in cancer cervix patients. Conclusion: Caregivers with breast and cervical cancer patients are vulnerable if the caregiver is male, from low socioeconomical background, more closely related and when the patients received poor treatment modalities.

Caregiver Burden in Patients Receiving Ranibizumab Therapy for Neovascular Age Related Macular Degeneration.

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Rishma Gohil

Full Text Available To assess the caregiver burden and factors determining the burden in patients receiving ranibizumab therapy for neovascular AMD (nAMD.This is a cross-sectional questionnaire survey of 250 matched patient caregiver dyads across three large ophthalmic treatment centres in United Kingdom. The primary outcome was the subjective caregiver burden measured using caregiver reaction assessment scale (CRA. Objective caregiver burden was determined by the caregiver tasks and level of care provided. The factors that may predict the caregiver burden such as the patient's visual acuity of the better eye and vision related quality of life, demographics, satisfaction and support provided by the healthcare and the health status of the dyads were also collected and assessed in a hierarchical regression model.The mean CRA score was 3.2±0.5, similar to the score reported by caregivers for atrial fibrillation who require regular hospital appointments for monitoring their thromboprophylaxis. Caregiver tasks including accompanying for hospital appointments for eye treatment and patient's visual acuity in the better eye were the biggest contributors to the caregiver burden hierarchical model explaining 18% and 11% of the variance respectively.Ranibizumab therapy for nAMD is associated with significant caregiver burden. Both disease impact and treatment frequency contributed to the overall burden.

Dependency aspect of caregiver burden is uniquely related to cognitive impairment in Veterans.

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Stinson, Jennifer M; Collins, Robert L; Maestas, Kacey Little; Pacheco, Vitor; LeMaire, Ashley; Benge, Jared

2014-01-01

The psychosocial toll of caring for an individual with dementia is an important, if understudied, concept. For practitioners and researchers alike, understanding the relation between patient characteristics and different facets of caregiver burden is important for guiding treatment and prevention efforts. The current study analyzed the dimensions of caregiver burden and the relation between caregiver burden and results of neuropsychological testing. Participants included 243 dyads of caregivers and Veterans referred for neuropsychological evaluation. Caregivers completed the Zarit Burden Interview (ZBI) to assess caregiver burden. Patients completed a battery of neuropsychological tests measuring the domains of attention/processing speed, memory, language, and executive functioning. A principal components analysis of the ZBI revealed a three-factor structure: psychosocial burden, dependency burden, and guilt. Correlations with neuropsychological test performance by Veteran patients suggested that test performance in the memory, attention, processing speed, executive functioning, and emotional functioning domains were solely related to the caregiver dependency burden factor of the ZBI. Additional analyses suggested severity of dementia and number of tests in the impaired range further influenced reported caregiver burden. The current study is one of the few studies examining caregiver burden in relation to neuropsychological functioning in a mixed clinical sample and has important implications for clinical practice.

The Burden of Schizophrenia on Caregivers

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Filiz Adana

2011-06-01

Full Text Available Caregivers’ burden in schizophrenia is a complex concept often with negative connotations. The concept refers to the impact of having a schizophrenia patient in the family including emotional, psychological, physical, economic distress and feelings of shame, embarrassment, guilt, and self-blame expe-rienced by the caregivers. There are objective and subjective aspects of care-givers’ burden. The objective burden refers to observed and verifiable impact of the diseased person in the family such as the patients disturbing behaviors, economic difficulties, and loss of income, restricted social activities, distressed household atmosphere, and undesirable influences on physical and mental health of the family members. The subjective burden refers to the extent of emotional distress caused by the objective burden. The data in the pertinent literature suggest an association between caregivers’ burden and sex, ethnicity, culture, caregivers’ health and quality of life, social support, and the symptomatology as presented by the patient. In order to promote mental health of schizophrenia patients along with their caregivers, the mental health workers should strive to find the means of supporting, informing, and cooperating with the family members. Psychosocial interventions designed for families and psychosocial rehabilitations programs designed for schizophrenia patients are effective means of easing caregivers’ burden.

High perceived caregiver burden for relatives of patients following hip fracture surgery

DEFF Research Database (Denmark)

Ariza-Vega, Patrocinio; Ortiz-Piña, Mariana; Kristensen, Morten Tange

2018-01-01

treatment strategies such as the support and training of the caregivers in patient handling during hospital stay could be carried out to reduce caregiver burden. Implications for rehabilitation The main caregiver of a hip fracture patient is usually a woman who is the daughter of the patient, and reducing...... her burden of care should be included as one of the objectives of rehabilitation treatment. The caregivers of hip fracture patients must be considered as part of the treatment during the patient's recovery period, and patient handling training should be provided to the caregivers of hip fracture......PURPOSE: To determine the profile of the main informal caregivers, the evolution of the caregiver burden, and the influencing factors of caregiver burden at 1-year after hip fracture surgery. METHODS: In this prospective cohort study, a total of 172 informal caregivers of patients were interviewed...

Dementia caregiver burden: reliability of the Brazilian version of the Zarit caregiver burden interview

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Taub Anita

2004-01-01

Full Text Available The object of this article is to examine the reliability of the Brazilian version of the Zarit Caregiver Burden Interview (ZBI. The instrument is a 22-item scale assessing the extent to which caregivers view their responsibilities as having an adverse impact on their social life, health, emotional well-being, and finances. We assessed 50 primary informal caregivers of demented patients coming from 3 different health care centers, using the test-retest method. Analysis of the results showed an intraclass reliability coefficient of 0.88, while Cronbach's coefficient alpha was 0.77 for the test and 0.80 for the retest items. The Brazilian version of ZBI shows sufficient reliability, comparable to the original version.

Burden in family caregivers of the elderly: prevalence and association with characteristics of the elderly and the caregivers

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Lara de Sa Neves Loureiro

2013-10-01

Full Text Available A cross-sectional, epidemiological study aimed to estimate the prevalence of burden among family caregivers of impaired elderly residents in the city of João Pessoa, and to identify associations between the mean burden and social and demographic characteristics of the elderly and the caregivers. A total number of 240 elderly residents in a previously drawn census tract participated in this research. The sample was composed of 52 elderly and their caregivers. For data collection, a questionnaire was applied with questions on social and demographic characteristics of elderly and caregivers, and the Burden Interview Scale was used. Results showed a high prevalence of burden among caregivers (84.6%, in which a statistically significant association was found with the following characteristics: retired elderly, elderly as head of family, spousal caregivers, and caregivers with less education. The findings of this study may contribute to the development of activities focused on formal and emotional support for the caregivers.

Caregiver burden among relatives of patients with schizophrenia in ...

African Journals Online (AJOL)

Background. Caring for patients with schizophrenia places an enormous burden on the caregivers. The magnitude of this problem remains largely unknown in sub-Saharan Africa. Objective. The objective of this study was to determine the nature of the burden reported by caregiving relatives of patients with schizophrenia.

Caring for frail elders with musculoskeletal conditions and family caregivers' subjective well-being: The role of multidimensional caregiver burden.

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Lu, Nan; Liu, Jinyu; Lou, Vivian W Q

2015-01-01

The present study examined the unique set of correlates of each dimension of the burden experienced by family caregivers of frail elders with musculoskeletal (MSK) conditions in China, and the role of caregiver burden in between caregiver stressors and subjective well-being. The data was derived from a community sample of 494 elder-caregiver dyads from six urban districts of Shanghai (China). The elders were aged 75 or above, needed assistance in activities of daily living (ADL) and had MSK conditions. The family caregivers were these elders' primary caregivers and at the age of 18 or older. Path analysis was used to examine the proposed model. Care recipients' functional health, cognitive status and behavioral problems affected the multiple dimensions of caregiver burden differently. These three stressors also indirectly affected caregivers' subjective well-being through physical, social and developmental burden. The findings highlighted the mediator role of caregiver burden in between caregiver stressors and subjective well-being, which supported burden-as-mediator theory in understanding family caregiving for frail elders with musculoskeletal conditions in a Chinese context. The focus of intervention should be varied according to the levels of the primary stressors. Policy and intervention implications with regard to the ways of helping Chinese families care for their frail elders with MSK conditions were discussed. Copyright © 2015 Elsevier Ireland Ltd. All rights reserved.

Caregiver burden among relatives of patients with schizophrenia in Katsina, Nigeria

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Abdulkareem Jika Yusuf

2009-06-01

Full Text Available Objective: Caring for patients’ with schizophrenia leads to an enormous burden on the caregivers. However, the magnitude of this problem remains largely unknown in Sub-Saharan Africa. The objective of this study was to determine the burden of care giving among relatives of patients with schizophrenia. Materials and method: A total of 129 primary care-givers of patients with schizophrenia attending out-patient clinic of Katsina state Psychiatric Hospital were interviewed using a socio-demographic data collection sheet and Zarith Burden Interview (ZBI. Data obtained was analysed using Statistical Package for Social Sciences version 13. Results: The mean age of the respondents was 45.07±8.91. Majority of the caregivers are females. High level of burden was found in 47.3% of the respondents. The level of burden experienced was significantly associated with place of residence and family size. Conclusion: Schizophrenia is associated with high level of caregiver burden and effort should be made at alleviating this burden for better out come in both the patients and caregivers.

Factor analysis of the Zarit Burden Interview in family caregivers of patients with amyotrophic lateral sclerosis.

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Oh, Juyeon; Kim, Jung A

2018-02-01

The Zarit Burden Interview has been used in many studies to assess caregiver burden in family caregivers of patients with amyotrophic lateral sclerosis, but the factor structure of the Zarit Burden Interview in the caregivers of amyotrophic lateral sclerosis patients is unknown. The aim of this study was to explore the factor structure of the Zarit Burden Interview in family caregivers of amyotrophic lateral sclerosis patients using exploratory factor analysis. The exploratory factor analysis was performed using generalized least squares with oblique rotation in a sample of 202 family caregivers. Three factors had an eigenvalue greater than 1 and accounted for 60.33% of the total variance. The three factors were named as follows: (factor 1) "Social restrictions" (items 2, 3, and 10-15); (factor 2) "Self-criticism" (items 20-21); and (factor 3) "Anger and frustration" (items 1, 4-6, 9, and 16-19). The correlation between factors 1 and 3 was much higher (r = 0.79) than that between factors 1 and 2 (r = 0.14) or factors 2 and 3 (r = 0.15). The findings of this study enriched our understanding of several meaningful dimensions of the caregiving burden in caregivers of an amyotrophic lateral sclerosis population and provided opportunities for future intervention.

Relationship between Mental Health and Burden among Primary Caregivers of Outpatients with Schizophrenia.

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Yu, Wenjun; Chen, Jia; Hu, Jize; Hu, JingChu

2018-01-24

There is growing recognition that caring for a patient with schizophrenia often results in high levels of perceived burden and poorer overall mental health for caregivers. A quantitative cross-sectional design and standardized instruments were used to collect data from 355 primary caregivers of adults in outpatient care with schizophrenia in China. Structural equation modeling was used to examine the association between caregiver burden and mental health among primary caregivers and whether this association is influenced by personality, coping style, and family functioning, based on a diathesis-stress perspective. Goodness-of-fit indices (χ 2 /df = 1.406, GFI = 0.919, CFI = 0.957, etc.) confirmed that the modified model fit the data well. In line with the diathesis-stress model, and with this study's hypotheses, we found that caregiver burden was significantly related to mental health outcomes directly. The final model showed that personality traits, coping style, and family function influenced the relationship between caregiver burden and mental health. The neuroticism personality traits have a direct effect on caregiver burden and family functioning in this sample. Coping style had a direct effect on the caregiver burden, and family functioning had a direct effect on the caregiver burden. Our final model about primary caregivers can be applied clinically to predict mental health outcomes from caregiver burden. © 2018 Family Process Institute.

EFFECTS OF REHABILITATION SERVICES ON ANXIETY, DEPRESSION, CARE-GIVING BURDEN AND PERCEIVED SOCIAL SUPPORT OF STROKE CAREGIVERS

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Ali Yavuz Karahan

2014-01-01

Full Text Available Background: Few data are available on the specific care giving-related problems of stroke patient’s caregivers and factors that influence the burden of these caregivers. Aim: To study the influences of the active rehabilitation process on anxiety, depression, care burden and perceived social support level of stroke patients caregivers. Design: A prospective clinical trial. Setting: Patients and caregivers entering a rehabilitation program at a university hospital in Turkey. Populations: Ninety patients with a first episode of stroke and 90 caregivers responsible for their care were recruited for our study. Methods: Patients and caregivers were assessed before and after the active rehabilitation process. The functional disability level of the patients was assessed by Functional Independence Measure (FIM. The Beck Anxiety Scale (BAS and the Beck Depression Scale (BDS were used for anxiety and depression assessment, the Zarit Care Burden Scale (ZCBS for care burden assessment and the Multi-Dimensional Scale of Perceived Social Support (MDSPSS for perceived social support assessment. Results: A statistically significant rise is observed in the special person sub-assessment of MDSPSS in both female and male caregivers. Also, a significant decrease in care burden, anxiety and depression levels of caregivers was noted after the rehabilitation program (p < 0.05. Conclusion: Caregivers accept the rehabilitation period as important social support in addition to the support provided by family and friends. Also, our positive results were associated with an improvement in the patients’ functional level and an increase in the acquisition of knowledge and skill required of caregivers in order to provide care during rehabilitation. Clinical Rehabilitation Impact: The rehabilitation team should be aware of the fact that the perceived care burden may be greater due to the lack of knowledge concerning available resources and due to the inability to cope with

Effects of rehabilitation services on anxiety, depression, care-giving burden and perceived social support of stroke caregivers.

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Karahan, Ali Yavuz; Kucuksen, Sami; Yilmaz, Halim; Salli, Ali; Gungor, Tayfun; Sahin, Muhammed

2014-01-01

Few data are available on the specific care giving-related problems of stroke patient's caregivers and factors that influence the burden of these caregivers. To study the influences of the active rehabilitation process on anxiety, depression, care burden and perceived social support level of stroke patients caregivers. A prospective clinical trial. Patients and caregivers entering a rehabilitation program at a university hospital in Turkey. Ninety patients with a first episode of stroke and 90 caregivers responsible for their care were recruited for our study. Patients and caregivers were assessed before and after the active rehabilitation process. The functional disability level of the patients was assessed by Functional Independence Measure (FIM). The Beck Anxiety Scale (BAS) and the Beck Depression Scale (BDS) were used for anxiety and depression assessment, the Zarit Care Burden Scale (ZCBS) for care burden assessment and the Multi-Dimensional Scale of Perceived Social Support (MDSPSS) for perceived social support assessment. A statistically significant rise is observed in the special person sub-assessment of MDSPSS in both female and male caregivers. Also, a significant decrease in care burden, anxiety and depression levels of caregivers was noted after the rehabilitation program (p social support in addition to the support provided by family and friends. Also, our positive results were associated with an improvement in the patients' functional level and an increase in the acquisition of knowledge and skill required of caregivers in order to provide care during rehabilitation. The rehabilitation team should be aware of the fact that the perceived care burden may be greater due to the lack of knowledge concerning available resources and due to the inability to cope with stress effectively.

Quality of life and burden in caregivers of patients with epilepsy.

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Westphal-Guitti, Ana Carolina; Alonso, Neide Barreira; Migliorini, Rosa Cristina Vaz Pedroso; da Silva, Tatiana Indelicato; Azevedo, Auro Mauro; Caboclo, Luís Otávio Sales Ferreira; Sakamoto, Américo Ceiki; Yacubian, Elza Márcia Targas

2007-12-01

The purpose of this study was to compare quality of life and burden in 100 caregivers of adolescent and adult patients with epilepsy that started in adolescence. We invited caregivers of 50 patients with temporal lobe epilepsy (TLE) related to mesial temporal sclerosis and caregivers of 50 patients with juvenile myoclonic epilepsy (JME) to participate. After the caregivers answered a sociodemographic questionnaire, they answered the Brazilian version of the Burden Interview (BI) Scale and we assessed their quality of life using the 36-Item Short-Form Health Survey (SF-36). The mean ages of patients were 25.4 and 36.4 years and epilepsy duration was 14 and 25.6 years in the JME and TLE groups, respectively. We found a mild to moderate burden on caregivers in both groups, with a BI average score of 25.5 for JME and 30.7 for TLE. Caregivers in the JME group had lower scores in all domains of the SF-36 and reported higher burden. Low scores were also seen in three domains for the TLE group. These results suggest that caregivers of patients with both epileptic syndromes experience interference in their lives. When we compared the two groups, we found no difference between caregiver data on SF-36 and BI. Quality of life was significantly compromised in caregivers of patients with JME and TLE, and the two groups were burdened to a similar degree (mild to moderate). Nurses can carry out psychoeducative programs with the objective of diagnosing the impact of epilepsy in the family, decreasing burden, and improving quality of life for caregivers.

Burden and depression in primary caregivers of persons with visual impairment

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Shubhank Khare

2016-01-01

Full Text Available Context: Caregivers who assist persons with visual impairment often neglect their needs, resulting in burden and depression. Rehabilitation efforts, directed to the disabled, seldom target the caregiver. Aim: To assess burden and depression in persons caring for blind individuals. Settings and Design: This was a cross-sectional study carried out in the outpatient department of a tertiary-level teaching hospital in New Delhi. Materials and Methods : Institutional Ethical Board approval was obtained and written informed consent too was obtained from the participants involved in this study. Persons with best-corrected vision <20/200 in the better eye, and their primary caregivers, were recruited. We recorded demography, other illness/disability, household income, relationship with disabled person, and caregiver burden (Caregiver Burden Scale and depression (Centre for Epidemiologic Studies Depression Scale. Statistical Analysis: Statistical analysis was carried out using SPSS version 20 (Released 2011. Armonk, NY: IBM Corp.; range, average, and standard deviation were determined for age, burden, and depression. The association between burden and depression was determined using Pearson′s correlation; the relationship between degree of disability and caregiver burden and depression was determined using unpaired t-test; using multiple linear regression, factors were found to be statistically significant; significance was taken at P < 0.05. Results: Twenty-seven (53.0% men and 24 (47.0% women had visual impairment. Most caregivers (n = 40; 81.6% were first-degree relatives or a spouse; 32 (65% had schooling <5 years; and 29 (59% were unemployed. Depression ranged from 21 to 52 (average 43.2 ± 5.71; it correlated with degree of disability (P = 0.012, household income (r = −0.320; P = 0.025, and burden (r = 0.616; P < 0.001. Burden ranged from 30 to 73 (average 54.5 ± 6.73 and correlated with degree of disability (P = 0.006. On multiple linear

The Burden of Schizophrenia on Caregivers

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Filiz Adana; Hulya Arslantas

2011-01-01

Caregivers’ burden in schizophrenia is a complex concept often with negative connotations. The concept refers to the impact of having a schizophrenia patient in the family including emotional, psychological, physical, economic distress and feelings of shame, embarrassment, guilt, and self-blame expe-rienced by the caregivers. There are objective and subjective aspects of care-givers’ burden. The objective burden refers to observed and verifiable impact of the diseased person in the family suc...

The Burden Endured by Caregivers of Patients With Morquio A Syndrome

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Christian J. Hendriksz MD

2014-07-01

Full Text Available This international survey performed by direct personal interview or mail evaluated the global burden among primary caregivers of patients with Morquio A syndrome. Collected outcomes included self-reported time spent on caregiving, proportion of daily activities (from the Mucopolysaccharidosis Health Assessment Questionnaire requiring caregiver assistance, and how the patient’s age and wheelchair use affect these. In addition, the impact of caregiving on the caregivers’ relationship with family and friends, physical and mental health, and employment status and income was evaluated. Caregiver burden increased with disease progression. Adult patients always using a wheelchair required substantially more caregiving time and complete assistance with a larger proportion of daily activities than more mobile patients. In children, this was less apparent. Caregivers suffered physically and emotionally and their family and social life and financial situation were considerably impacted. Improvements in patient mobility may substantially reduce the level of caregiver support and the burden of caregiving.

Informal caregiving burden and perceived social support in an acute stroke care facility.

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Akosile, Christopher Olusanjo; Banjo, Tosin Olamilekan; Okoye, Emmanuel Chiebuka; Ibikunle, Peter Olanrewaju; Odole, Adesola Christiana

2018-04-05

Providing informal caregiving in the acute in-patient and post-hospital discharge phases places enormous burden on the caregivers who often require some form of social support. However, it appears there are few published studies about informal caregiving in the acute in-patient phase of individuals with stroke particularly in poor-resource countries. This study was designed to evaluate the prevalence of caregiving burden and its association with patient and caregiver-related variables and also level of perceived social support in a sample of informal caregivers of stroke survivors at an acute stroke-care facility in Nigeria. Ethical approval was sought and obtained. Fifty-six (21 males, 35 females) consecutively recruited informal caregivers of stroke survivors at the medical ward of a tertiary health facility in South-Southern Nigeria participated in this cross-sectional survey. Participants' level of care-giving strain/burden and perceived social support were assessed using the Caregiver Strain Index and the Multidimensional Scale of Perceived Social Support respectively. Caregivers' and stroke survivors' socio-demographics were also obtained. Data was analysed using frequency count and percentages, independent t-test, analysis of variance (ANOVA) and partial correlation at α =0.05. The prevalence of care-giving burden among caregivers is 96.7% with a high level of strain while 17.9% perceived social support as low. No significant association was found between caregiver burden and any of the caregiver- or survivor-related socio-demographics aside primary level education. Only the family domain of the Multidimensional Scale of Perceived Social Support was significantly correlated with burden (r = - 0.295). Informal care-giving burden was highly prevalent in this acute stroke caregiver sample and about one in every five of these caregivers rated social support low. This is a single center study. Healthcare managers and professionals in acute care facilities

Association of impairments of older persons with caregiver burden among family caregivers: Findings from rural South India.

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Ajay, Shweta; Kasthuri, Arvind; Kiran, Pretesh; Malhotra, Rahul

In India, owing to cultural norms and a lack of formal long-term care facilities, responsibility for care of the older person falls primarily on the family. Based on the stress process model, we assessed the association of type and number of impairments of older persons (∼primary stressors) with caregiver burden among their family caregivers in rural South India. All impaired older persons (aged ≥60, with impairment in activities of daily living (ADL) or cognition or vision or hearing) residing in 8 villages in Bangalore district, Karnataka, India, and their primary informal caregivers were interviewed. Caregiver burden was measured using the Zarit Burden Interview (ZBI; higher score indicating greater perceived burden). Linear regression models, adjusting for background characteristics of older persons and caregivers, assessed the association of type of impairment (physical [Yes/No], cognitive [Yes/No], vision [Yes/No] and hearing [Yes/No]) and number (1 or 2 or 3 or 4) of older person impairments with caregiver burden. A total of 140 caregivers, caring for 149 older persons, were interviewed. The mean (standard deviation) ZBI score was 21.2 (12.9). Of the various older person impairments, ZBI score was associated only with physical impairment (β=6.6; 95% CI: 2.1-11.1). Relative to caregivers of older person with one impairment, those caring for an older person with all 4 impairments had significantly higher ZBI score (β=13.9; CI: 2.5-25.4). Caregivers of older persons with multiple impairments, especially physical impairment, are vulnerable. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Combined life satisfaction of persons with stroke and their caregivers: associations with caregiver burden and the impact of stroke

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von Koch Lena

2011-01-01

Full Text Available Abstract Background Little is known about the life satisfaction of the person with stroke combined with their caregiver, i.e. the dyad, despite the fact that life satisfaction is an important rehabilitation outcome. The aim of this study was to describe the dyads combined life satisfaction and to understand this in relationship to the perceived impact of stroke in everyday life and caregiver burden. Methods In this cross-sectional study, the life satisfaction of persons and their informal caregivers was measured in 81 dyads one year post stroke. Their global life satisfaction, measured with LiSat-11, was combined to a dyad score and the dyads were then categorized as satisfied, dissatisfied or discordant. The groups were compared and analyzed regarding levels of caregiver burden, measured with the Caregiver Burden scale, and the perceived impact of stroke in everyday life, measured with the Stroke Impact Scale (SIS. Results The satisfied dyads comprised 40%, dissatisfied 26% and those that were discordant 34%. The satisfied dyads reported a significantly lower impact of the stroke in everyday life compared with the dyads that were not satisfied. As expected, dyads that were not satisfied reported a significantly greater caregiver burden compared with the satisfied dyads. The discordant group was further broken down into a group of dissatisfied and satisfied caregivers. The caregivers that were not satisfied in the discordant group perceived a significantly greater level of caregiver burden compared with the satisfied group. Even caregivers who were satisfied with life but whose care recipients were not satisfied reported caregiver burden. Conclusions Measuring combined life satisfaction provides a unique focus and appears to be a feasible way of attaining the dyads' perspective. The findings suggest that those dyads with a discordant life satisfaction could be vulnerable because of the caregivers' reported caregiver burden. These findings

Perceptions of burden of caregiving by informal caregivers of cancer patients attending University of Calabar Teaching Hospital, Calabar, Nigeria

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Akpan-Idiok, Paulina Ackley; Anarado, Agnes Nonye

2014-01-01

Introduction Cancer care is devastating to families. This research studied the informal caregivers’ perceptions of burden of caregiving to cancer patients attending University of Calabar Teaching Hospital, Calabar. Methods The research adopted a cross-sectioned descriptive design and 210 caregivers providing care to advanced cancer patients were purposively selected. Data were collected using a researcher developed questionnaire and standardized Zarit Burden Interview scale (ZBIS). Data collected were analysed using descriptive and chi-square statistics with the help of SPSS 18.0 and PAS 19.0 softwares. Results The results indicated that the caregivers were in their youthful and active economic age, dominated by females, Christians, spouses, partners and parents. The burden levels experienced by the caregivers were as follows: severe (46.2%), moderate (36.2%) and trivial of no burden (17.6%). The forms of burden experienced were physical (43.4%), psychological (43.3%), financial (41.1%) and social (46.7%), quite frequently and nearly always. Psychological and social forms of burden had the highest weighted score of 228 in terms of magnitude of burden. The result further showed that there was a significant (P = 0.001) and inverse association between caregivers’ burden and the care receivers’ functional ability. The level of burden also increased significantly (P = 0.000) with the duration of care, while there was also a significant (P = 0.01) relationship between caregivers’ experience of burden and their desire to continue caregiving. Conclusion Caregiving role can be enhanced by provision of interventions such as formal education programme on cancer caregiving, oncology, home services along side with transmural care. PMID:25419297

The Burden of Dysphagia on Family Caregivers of the Elderly: A Systematic Review

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Ashwini M. Namasivayam-MacDonald

2018-06-01

Full Text Available With the rapid increase in the elderly population, there is a simultaneous increased need for care provided by family caregivers. Research in the field of head and neck cancer has indicated that caring for patients with dysphagia can impact a caregiver’s quality of life. Given that many older adults present with dysphagia, one can assume that their caregivers are equally, if not more greatly, affected. The purpose of this systematic review was to examine all relevant literature regarding the caregiver burden in caregivers of community-dwelling older adults with dysphagia. A review of relevant studies published through April 2018 was conducted using search terms related to dysphagia, caregiver burden, and older adults. The search yielded 2331 unique abstracts. Of the 176 abstracts that underwent full review, four were accepted. All reported an increase in caregiver burden due to presence of dysphagia in care recipients. Worsening feeding-related behaviors were associated with burden, and the use of feeding tubes was more frequently associated with “heavy burden”. The presence of dysphagia in community-dwelling older adults is a factor leading to an increased burden among caregivers. Although aspects of dysphagia play a role in the caregiver burden, the specific reasons for the increased burden are unknown. Clinicians should be aware of dysphagia as a source of the burden, and future studies should further define the relationship between dysphagia and the caregiver burden in order to develop comprehensive approaches to care.

Burden experience of caregivers of acute lymphoblastic leukemia: Impact of coping and spirituality

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Usha Chivukula

2018-01-01

Full Text Available Background: When a child is diagnosed with cancer the parents as caregivers experience severe anxiety, trauma, ambiguity, and grief. Caregivers of cancer patients thus deal with the management of their own psychological distress along with the child's illness.Aim: Coping plays a crucial role in improving the caregivers' physical and emotional well-being. Spirituality is an important means of consolation, strength, and emotional support during this phase. The present study aims to investigate the impact of coping and spirituality on caregiver burden.Methods: A total of 100 caregivers of children between the age group of 3–11 years, diagnosed with acute lymphoblastic leukemia were the participants of the study. The participants were recruited from cancer hospitals in Hyderabad. The study adopted a between-group design to find out if mothers and fathers differed in their coping strategies, spirituality, and caregiver burden. The study also adopted a correlation design to find the relationship between coping, spirituality, and caregiver burden. Descriptive statistics and multiple linear regression analysis were conducted to identify if coping and spirituality predict caregiver burden.Results: The results showed no significant difference in the burden experienced by both mothers and fathers; however, mothers and fathers used different coping strategies and differed on the dimensions of spirituality. The results of multiple linear regression indicated that dimensions of coping and spirituality were significant predictors of caregiver burden.Conclusion: Cancer in the child impacts the parent's burden but providing sufficient support and implementing effective coping strategies, will help in mitigating the intensity of caregiver burden. It is essential that the hospital authorities and policymakers understand that a professional health psychologist could be a liaison between the doctor, patient, and the caregiver in bringing down the levels of burden

The Impact of Family Functioning on Caregiver Burden among Caregivers of Veterans with Congestive Heart Failure

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Moore, Crystal Dea

2010-01-01

A cross-sectional study of 76 family caregivers of older veterans with congestive heart failure utilized the McMaster model of family functioning to examine the impact of family functioning variables (problem solving, communication, roles, affective responsiveness, and affective involvement) on caregiver burden dimensions (relationship burden,…

Predictors of Caregiver Burden among Mothers of Children with Chronic Conditions

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Karina Javalkar

2017-05-01

Full Text Available Objective: The complex medical regimens of children and adolescents with chronic conditions can have a significant impact on families and households. Caregivers may experience burden, which can lead to negative health consequences and poor quality of life. The objective of this study was to determine child-related predictors and risk factors for caregiver burden among parents of children with chronic conditions. Methods: We distributed an institutional review board (IRB-approved, online cross-sectional survey to parents of children who attended the Victory Junction therapeutic camp. Parents provided information on child demographics, disease characteristics, and healthcare utilization. Parents also answered the adapted Zarit Burden Interview, which measured caregiver burden. Children completed scales about self-management and self-efficacy. Linear regression analyses determined how children’s disease characteristics, health utilization, and self-management skills were associated with caregiver burden. Results: We enrolled 150 mother-child dyads. The mean age of child participants was 12.23 years (±2.5, with an age range of 6 to 16 years. It was determined that children’s number of medicines and injections (β = 0.161, p = 0.047, a diagnosis of attention-deficit/hyperactivity disorder (ADHD in addition to the primary medical condition (β = 0.216, p = 0.008, frequent visits with a primary care provider (PCP (β = 0.209, p = 0.026 and emergency room (ER visits (β = 0.197, p = 0.038, and lower child self-efficacy (β = −0.241, p = 0.041 were predictors of increased caregiver burden. Conclusions: We identified risk factors for caregiver burden among mothers. Future studies should explore additional child-related characteristics as they relate to caregiver burden, and should determine if interventions for mothers of children with chronic conditions can lead to positive outcomes.

Neuropsychiatric Symptoms in Parkinson’s Disease Dementia Are Associated with Increased Caregiver Burden

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Yoon-Sang Oh

2015-01-01

Full Text Available Objective Neuropsychiatric symptoms are common in Parkinson’s disease dementia (PDD. Frequent and severe neuropsychiatric symptoms create high levels of distress for patients and caregivers, decreasing their quality of life. The aim of this study was to investigate neuropsychiatric symptoms that may contribute to increased caregiver burden in PDD patients. Methods Forty-eight PDD patients were assessed using the 12-item Neuropsychiatric Inventory (NPI to determine the frequency and severity of mental and behavioral problems. The Burden Interview and Caregiver Burden Inventory were used to evaluate caregiver burden. Results All but one patient showed one or more neuropsychiatric symptoms. The three most frequent neuropsychiatric symptoms were apathy (70.8% and anxiety (70.8%, followed by depression (68.7%. More severe neuropsychiatric symptoms were significantly correlated with increased caregiver burden. The domains of delusion, hallucination, agitation and aggression, anxiety, irritability and lability, and aberrant motor behavior were associated with caregiver stress. After controlling for age and other potential confounding variables, total NPI score was significantly associated with caregiver burden. Conclusions The results of this study confirm that neuropsychiatric symptoms are frequent and severe in patients with PDD and are associated with increased caregiver distress. A detailed evaluation and management of neuropsychiatric symptoms in PDD patients appears necessary to improve patient quality of life and reduce caregiver burden.

A caregiver educational program improves quality of life and burden for cancer patients and their caregivers: a randomised clinical trial.

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Belgacem, Bénédicte; Auclair, Candy; Fedor, Marie-Christine; Brugnon, David; Blanquet, Marie; Tournilhac, Olivier; Gerbaud, Laurent

2013-12-01

The French setting, including laws and guidelines, advocates greater involvement of informal caregivers in the care of cancer patients to protect the caregivers from depression, distress, and a decrease in their quality of life. This study aimed to assess the efficacy of a caregiver educational programme by measuring two outcomes: patients' and caregivers' quality of life and caregivers' burden. A multicentre randomised controlled trial was performed in six oncology wards in French hospitals. Eligible patients had a cancer, a main caregiver, allowed their caregivers' involvement, and received an inclusion agreement by a doctor/psychologist dyad. The experimental group participated in an educational programme performed by nurses to improve their skills in meal support, nursing care, welfare care, or symptom management. The SF36 and the Zarit burden scales were used to measure quality of life and caregivers' burden at the beginning and at the end of the study. 67 patients were randomised and 33 were included in the experimental group. Evolution scores, which measured the difference between baseline and final scores, showed an improvement in patients' and caregivers' quality of life and an alleviated burden for experimental group caregivers. An educational programme for caregivers encourages the involvement of patients, informal caregivers and health-care providers in a triangular relationship which enhances the quality of life of patients and caregivers alike and decreases caregivers' burden. Care organisation should therefore be rethought as a triangular relationship between patients, caregivers and health-care providers, with nurses as the mainstay. Copyright © 2013 Elsevier Ltd. All rights reserved.

Feelings of burden among family caregivers of people with spinal cord injury in Turkey.

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Secinti, E; Yavuz, H M; Selcuk, B

2017-08-01

The study was designed as a cross-sectional survey. The purpose of the study was to examine the level of feelings of burden in family caregivers of people with spinal cord injury (SCI) in Turkey, and to explore its predictors. Turkey. One hundred family caregivers of people with SCI completed measures of burden of caregiving, depression, social support and physical health. The SCI participants completed a measure of functional independence. Multivariate statistics and structural equation modeling (SEM) were conducted to identify significant predictors of caregiver burden. Caregiver burden was significantly related to caregivers' feelings of depression. SEM analysis showed that social support from family and from friends predicted caregiver burden via depression. Caregivers' age, sex, educational level, physical health and household income did not significantly predict their feelings of depression or burden. Our findings revealed that support received from both families and friends is an important source for alleviating the depressive feelings of caregivers and, in return, their burden in the caregiving. In Turkey, high support from family members is expected and is important for psychological well-being, yet the current study showed that the support received from friends also has unique contribution to the well-being of the caregivers of persons with SCI. Overall, our findings highlight the importance of supportive relationships between family as well as friends for the caregivers who may have to provide lifetime care for their family member with special needs.

Quality of life in family caregivers of schizophrenia patients in Spain: caregiver characteristics, caregiving burden, family functioning, and social and professional support.

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Ribé, José M; Salamero, Manel; Pérez-Testor, Carles; Mercadal, Josep; Aguilera, Concepción; Cleris, Margarida

2018-03-01

Caregivers experience physical and mental stress that ends up lowering their quality of life (QoL). Our goal was to research (a) the level of caregivers QoL; (b) the relationships between the demographic characteristics of the caregivers, their caregiving burden, their family functioning, their social and professional support and their QoL and (c) the best predictors of caregivers QoL. 100 key caregivers (70% parents, 8% spouses, 17% siblings and 5% children) were studied using the world health organization quality of life-Bref (WHOQOL-BREF) to research their QoL, the Zarit Scale to assess their perception of their caregiving burden, the Social Network Questionnaire to examine their social support, the Family APGAR to assess the satisfaction with social support from the family and a professional support scale (Escala de Apoyo Profesional) to determine the professional support received by caregivers was performed. Scores on the WHOQOL-BREF in the Physical, Psychological, Social and Environment domains were 15.0 (SD = 3.7), 13.3 (SD = 4.2), 11.0 (SD = 4.7) and 13.5 (SD = 3.1), respectively. Through bivariate analysis, the dimensions that showed a positive significant association with QoL were being a young male caregiver who was a working father with a high educational level and help from other family members. Caregivers of patients who were older and had a later onset of the illness, a lower score on the Zarit Scale and a high score on the Social Network Questionnaire, Family APGAR and Escala de Apoyo Profesional showed higher QoL. Many of these variables made a unique contribution in the multivariate analysis. There is a significant association between the caregiver's burden and their QoL. Regression analysis showed that the best predictors of QoL were caregiving burden, social support and professional support.

Moderating role of positive aspects of caregiving in the relationship between depression in persons with Alzheimer's disease and caregiver burden.

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Xue, Haihong; Zhai, Junwei; He, Runlian; Zhou, Liye; Liang, Ruifeng; Yu, Hongmei

2018-03-01

Improving caregivers' positive perception of their role may be important in reducing their subjective burden when caring for Alzheimer's disease (AD) patients with depression. The purpose of present study was to explore the moderating role of the positive aspects of caregiving (PAC) on the subjective burden on family caregivers when managing depressive behaviors. We conducted a cross-sectional study including 200 pairs of patients with mild AD and their caregivers from three communities and two hospitals in Taiyuan, China in October 2014. The latent variable interaction model based on a two stage least squares (2SLS) regression was fitted. A significant moderating effect of the PAC was found on the relationship between depression in patients with AD and the caregiver burden they cause. Caregivers dealing with patients with low levels of depression but with high levels of the PAC had significantly lower levels of caregiver burden compared to those caregivers with the low levels of PAC. Continuously detecting the patient's mental state combined with caregivers having an optimistic attitude towards life may improve the quality of life for both patients and caregivers. Copyright © 2018 Elsevier B.V. All rights reserved.

Caregiving burden in foreign domestic workers caring for frail older adults in Singapore.

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Ha, Ngoc Huong Lien; Chong, Mei Sian; Choo, Robin Wai Munn; Tam, Wai Jia; Yap, Philip Lin Kiat

2018-03-21

Although foreign domestic workers (FDWs) play a significant role in caring for frail seniors in Singapore and are vulnerable to caregiving burden, there has been little research conducted hitherto. We explored caregiver burden and its determinants in this study. FDWs (N = 221, M age = 32.3, SD = 6.23) recruited from a hospital geriatric unit completed the Zarit Burden Interview (ZBI) administered in English, Bahasa Melayu, or Burmese. Univariate and multivariate regression were employed to investigate factors influencing caregiving burden in FDWs. Majority were Indonesians (60.0%), married (57.5%) with children (62.4%), with secondary-level education (59.7%), and providing care for >1 year (79.9%). Importantly, 25.1% reported physical health problems and 23.1% encountered language difficulties with employers. Univariate analysis revealed three significant factors associated with caregiving burden: nationality (p Indonesian and Burmese counterparts. The study highlights caregiver burden in FDWs and potential ways to alleviate it by empowering FDWs with dementia-specific caregiving skills, providing language training opportunities, and supporting particular FDW ethnic groups with more emotional and practical help.

Caregiver's Burden and Quality of Life: Caring for Physical and Mental Illness

Directory of Open Access Journals (Sweden)

Salvatore Settineri

2014-01-01

Full Text Available Several studies have been focused on the quality of life of caregivers caring for patients with exclusively physical or mental diseases, but little is known about the differences related to the burden experienced. This study had as its subject the burden of caregivers and their quality of life involved in helping patients with diseases (1 physical, (2 mental and (3 both pathological conditions. We interviewed 294 caregivers of outpatients undergoing physiotherapic, psychiatric and neuroriabilitative treatment. The evaluation was carried out with three instruments: an informative questionnaire, the Caregiver Burden Inventory (CBI and the Quality of Life Index (QoL -I. Results show that both the burden and the quality of life are significantly worse for caregivers who care for patients with both physical and mental diseases. Caregivers most disadvantaged are those who indicate as a reason of care the sense of duty rather than the affection. Finally, the sons and daughters, differently from the parents, showed a greater burden of required time and a lower quality of life. The investigation of the motivational aspects of the caregivers and the increased knowledge of the differences between the emotional experience of parents and children can contribute to the definition of more specific psycho-educational interventions and support.

[Psychoneuroimmunological predictors for burden in older caregivers of patients with Alzheimer's disease].

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Corazza, Danilla I; Pedroso, Renata V; Andreatto, Carla A A; Scarpari, Lais; Garuffi, Marcelo; Costa, José L R; Santos-Galduróz, Ruth F

2014-01-01

The responsibility of giving care to patients with Alzheimer's disease (AD) may result in health changes in the older caregiver. It is important to explore the factors which influence the presence of care burden and to create strategies to face this condition. In this context, the aims of present study were to investigate the relationships between psychoneuroimmunological parameters and determine the predictors to burden in older caregivers of patients with AD. A total of 30 AD older caregivers participating in the «Cognitive and Functional Kinesiotherapy Program in Elderly with Alzheimer's disease«(PRO-CDA)», de Rio Claro, SP-Brazil, were submitted to an assessment protocol to evaluate the psychoneuroimmunological parameters. A descriptive statistical analysis, Pearson correlation and multiple linear regressions were performed. The mean age of caregivers was 71.3 (±9.3), and predominantly are first-grade relatives. The caregiver burden was associated with depressive symptoms (r=0.60, P<.001), caregiver distress (r=0.68, P<.001), and neuropsychiatric disorders of AD patients (r=0.53, P<.001). The multiple regression analysis confirmed depressive symptoms and neuropsychiatric disturbances as predictors of caregiver burden. Caregiver burden is associated with, and influenced by parameters related to the caregiver psychological suffering and to characteristics inherent to AD. Thus, it is important to find strategies and implement non-pharmacological programs to provide support to older caregivers, and to assist in the treatment of patients with AD, in order to improve the integral health of this population. Copyright © 2013 SEGG. Published by Elsevier Espana. All rights reserved.

Reciprocity, Elder Satisfaction, and Caregiver Stress and Burden: The Exchange of Aid in the Family Caregiving Relationship.

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Dwyer, Jeffrey W.; And Others

1994-01-01

Examined how older mother's reciprocation of assistance provided by caregiving daughter simultaneously influences satisfaction of mother and stress/burden of caregiver in 135 mother-daughter dyads. Results indicated that reciprocity did not directly or indirectly affect mother's satisfaction but did significantly reduce stress/burden of daughters.…

Stroke management: Informal caregivers' burdens and strians of caring for stroke survivors.

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Gbiri, Caleb Ademola; Olawale, Olajide Ayinla; Isaac, Sarah Oghenekewe

2015-04-01

Stroke survivors live with varied degrees of disabilities and cares are provided largely by the informal caregivers. This study investigated informal caregivers' burden and strains of caring for stroke patients. This study involved 157 (81 males and 76 females) informal caregivers of stroke survivors receiving care in all secondary and tertiary health institutions with physiotherapy services in Lagos State, Nigeria. Information was collected through self-administered questionnaire during clinic-hours. Data was analyzed using Spearman's Rank Correlation Coefficient. The patients' age ranged between 20 and 79 (mean=59.6 ± 14.6 years). Sixty-one had haemorrhagic stroke while 96 had ischaemic stroke. The informal caregivers' age was 39.2 ± 12.8 years (range: 17-36 years). More (60.8%) participants reported moderate objective while 79.2% had mild subjective burdens. The following factors significantly increased (Pfinancial well-beings of the informal caregivers. Caring for stroke survivors put social, emotional, health and financial burdens and strains on the informal caregivers. These burdens and strains increase with duration of stroke, intimacy, smaller number of caregivers and length of daily caregiving. Therefore, informal caregivers should be involved in the rehabilitation plan for stroke patients and their well-being should also be given adequate attention. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

Relationships between appraisals of caregiver communication strategies and burden among spouses and adult children.

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Savundranayagam, Marie Y; Orange, J B

2011-11-01

The purpose of this study was to investigate the impact of caregivers' appraisals of the effectiveness of their own communication strategies on caregiver burden when caring for family members with Alzheimer's disease (AD). Family caregivers (N = 84) of participants with AD completed questionnaires appraising communication strategies, problem behaviors, and levels of three types of burden. Hierarchical linear regression models revealed that effective strategies and kinship status were significantly linked with stress burden, whereas effective strategies and problem behaviors were significantly related to relationship burden. Cognitive status of participants with AD significantly predicted objective burden. Caregivers who rated effective strategies as helpful were more likely to experience lower levels of stress and relationship burden. Findings provide preliminary support for understanding mechanisms by which the appraisals of communication strategies influence caregiver burden and justify testing empirically derived communication interventions.

Relationships between family resilience and posttraumatic growth in breast cancer survivors and caregiver burden.

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Liu, Ye; Li, Yuli; Chen, Lijun; Li, Yurong; Qi, Weiye; Yu, Li

2018-04-01

To examine the relationships between family resilience and posttraumatic growth (PTG) of breast cancer survivors and caregiver burden among principal caregivers in China. Participants in this cross-sectional study comprised 108 women aged 26 to 74 years (M = 49, SD = 9) with early-stage breast cancer and 108 principal caregivers. Participants were recruited from a comprehensive cancer center of a public hospital in Shandong Province, China. The principal caregivers completed the Shortened Chinese Version of the Family Resilience Assessment Scale and the Chinese Version of the Zarit Caregiver Burden Interview; patients completed the Short Form of the Posttraumatic Growth Inventory and questions designed to obtain sociodemographic information. Hierarchical regression analysis was conducted to assess the adjusted association between family resilience and PTG and caregiver burden, while controlling for sociodemographics. Families showed a slightly elevated level of family resilience since the cancer experience, and patients showed a moderate degree of PTG. Principal caregivers reported moderate burden. The Shortened Chinese Version of the Family Resilience Assessment Scale total score was positively related to the Short Form of the Posttraumatic Growth Inventory total score (β = .28, P Caregiver Burden Interview total score (β = -.28, P resilience impacts PTG of breast cancer survivors and caregiver burden. Our findings indicated the necessity of interventions to facilitate family resilience, promote PTG among breast cancer survivors, and decrease family members' caregiver burden. Copyright © 2018 John Wiley & Sons, Ltd.

Factors affecting caregiver burden of terminally ill adults in the home setting - A systematic review.

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He Leow, Mabel Qi; Wai Chi Chan, Sally

Background: Terminally ill people have complex physical and psychological needs. As a result, their caregivers may experience high levels of burden, and some caregivers are unable to cope with the burden. Thus, it is important to determine the various factors that may influence caregiver burden, so that healthcare professionals may implement strategies to reduce caregiver burden. In this review, "caregiver burden" was expanded to include "caregiver stress" and "caregiver strain", as the two terms were related to caregiver burden. The objective of this systematic review was to identify the factors that may influence caregiver burden of a terminally ill adult in the home setting. Types of participants: This review considered adult participants (above age 18) who were the main caregivers of a terminally ill adult in the home setting, and providing care for the terminally ill person at the point of participation in the study.Types of intervention: There was no specific intervention of interest for the study.Types of outcomes: The focus of study was the factors that affected caregiver burden of the terminally ill person.Types of studies: Quantitative studies such as randomised controlled trials (RCTs), controlled clinical trials (CCTs), interrupted time series (ITSs), controlled before after designs (CBAs), observational design (cohort, case-control), and descriptive surveys were included in the study. This review was limited to papers in English and Mandarin. A literature search from the inception of the database to October 2010 was conducted using major electronic databases. The databases used were CINAHL, MEDLINE, PsycINFO (Ovid), Scopus, SpringerLink, ScienceDirect, Web of Science, Mosby's Nursing Consult, Mednar: Deep web medical search, Proquest Dissertations and Theses and China Journal Net.Methodological quality: The quality of the potential studies was assessed by two independent reviewers using the critical appraisal checklists for descriptive/case studies

CHESS improves cancer caregivers' burden and mood: results of an eHealth RCT.

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DuBenske, Lori L; Gustafson, David H; Namkoong, Kang; Hawkins, Robert P; Atwood, Amy K; Brown, Roger L; Chih, Ming-Yuan; McTavish, Fiona; Carmack, Cindy L; Buss, Mary K; Govindan, Ramaswamy; Cleary, James F

2014-10-01

Informal caregivers (family and friends) of people with cancer are often unprepared for their caregiving role, leading to increased burden or distress. Comprehensive Health Enhancement Support System (CHESS) is a Web-based lung cancer information, communication, and coaching system for caregivers. This randomized trial reports the impact on caregiver burden, disruptiveness, and mood of providing caregivers access to CHESS versus the Internet with a list of recommended lung cancer websites. A total of 285 informal caregivers of patients with advanced nonsmall cell lung cancer were randomly assigned to a comparison group that received Internet or a treatment group that received Internet and CHESS. Caregivers were provided a computer and Internet service if needed. Written surveys were completed at pretest and during the intervention period bimonthly for up to 24 months. Analyses of covariance (ANCOVAs) compared the intervention's effect on caregivers' disruptiveness and burden (CQOLI-C), and negative mood (combined Anxiety, Depression, and Anger scales of the POMS) at 6 months, controlling for blocking variables (site, caregiver's race, and relationship to patient) and the given outcome at pretest. Caregivers randomized to CHESS reported lower burden, t(84) = 2.36, p = .021, d = .39, and negative mood, t(86) = 2.82, p = .006, d = .44, than those in the Internet group. The effect on disruptiveness was not significant. Although caring for someone with a terminal illness will always exact a toll on caregivers, eHealth interventions like CHESS may improve caregivers' understanding and coping skills and, as a result, ease their burden and mood.

Burden on informal caregivers of elderly cancer survivors: risk versus resilience.

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Jones, Simeon B W; Whitford, Hayley S; Bond, Melissa J

2015-01-01

This study assessed psychological morbidity and resilience, including the subjective burden of 76 caregivers of elderly cancer survivors utilizing a cross-sectional questionnaire. Participants were mainly elderly female spouses, sole-caregiving > 35 hours per week; 19.1% and 23.6% reported moderate or greater anxiety and depression, respectively. A significant regression model found depression, emotion-focused coping, and greater years since diagnosis as significant predictors of subjective caregiver burden. Thus, caregiving appears a dominant role for this group and the Brief Assessment Scale for Caregivers of the Medically Ill (BASC) appears to be an efficient screening tool for psychological morbidity in this under-supported group.

[Coping and subjective burden in primary caregivers of dependent elderly relatives in Andalusia, Spain].

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Pérez-Cruz, Margarita; Muñoz-Martínez, M Ángeles; Parra-Anguita, Laura; Del-Pino-Casado, Rafael

To analyse the relationship between the type of coping and subjective burden in caregivers of dependent elderly relatives in Andalusia (Spain). Cross-sectional study. Primary Health Care (autonomous community of Andalusia, Spain). A convenience sample of 198 primary caregivers of dependent elderly relatives. Coping (Brief COPE), subjective burden (caregiver stress index), objective burden (functional capacity [Barthel Index], cognitive impairment [Pfeiffer Test], behavioural problems of the care recipient [Neuropsychiatric Inventory], and caregivers' dedication to caring), gender and kinship. Most caregivers were women (89.4%), daughters of the care recipient (57.1%), and shared home with him/her (69.7%). On controlling for objective burden, gender and kinship, it was found that subjective burden was positively associated with dysfunctional coping (β=0.28; P<.001) and negatively with emotion-focused coping (β=-0.25; P=.001), while no association was found with problem-focused coping. Dysfunctional coping may be a risk factor for subjective burden, and emotion-focused coping may be a protective factor for that subjective burden regardless of the objective burden, and gender and kinship of the caregivers. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.

Family Stigma and Caregiver Burden in Alzheimer's Disease

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Werner, Perla; Mittelman, Mary S.; Goldstein, Dovrat; Heinik, Jeremia

2012-01-01

Purpose: The stigma experienced by the family members of an individual with a stigmatized illness is defined by 3 dimensions: caregiver stigma, lay public stigma, and structural stigma. Research in the area of mental illness suggests that caregivers' perception of stigma is associated with increased burden. However, the effect of stigma on…

Caregivers' burden in patients with COPD.

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Miravitlles, Marc; Peña-Longobardo, Luz María; Oliva-Moreno, Juan; Hidalgo-Vega, Álvaro

2015-01-01

Chronic obstructive pulmonary disease (COPD) is a very prevalent and invalidating disease. The aim of this study was to analyze the burden borne by informal caregivers of patients with COPD. We used the Survey on Disabilities, Personal Autonomy, and Dependency Situations (Encuesta sobre Discapacidad, Autonomía personal y Situaciones de Dependencia [EDAD]-2008) to obtain information on the characteristics of disabled individuals with COPD and their caregivers in Spain. Additionally, statistical multivariate analyses were performed to analyze the impact that an increase in dependence would have on the problems for which caregivers provide support, in terms of health, professional, and leisure/social dimensions. A total of 461,884 individuals with one or more disabilities and with COPD were identified, and 220,892 informal caregivers were estimated. Results showed that 35% of informal caregivers had health-related problems due to the caregiving provided; 83% had leisure/social-related problems; and among caregivers of working age, 38% recognized having profession-related problems. The probability of a problem arising was significantly associated with the degree of dependence of the patient receiving care. Caregivers of patients with great dependence showed a 39% higher probability of presenting health-related problems, 27% more professional problems, and 23% more leisure problems compared with those with nondependent patients. The results show the large impact on society in terms of the welfare of informal caregivers of patients with COPD. A higher level of dependence was associated with more severe problems in caregivers, in all dimensions.

Do informal caregivers in mental illness feel more burdened? A comparative study of mental versus somatic illnesses.

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Hastrup, Lene H; Van Den Berg, Bernard; Gyrd-Hansen, Dorte

2011-08-01

This study investigates a possible added subjective burden among informal caregivers to care recipients with a mental illness or a combination of mental and somatic illnesses compared with caregivers to care recipients with a somatic illness. The study also investigates the subjective caregiver burden by caregivers' characteristics and objective burden. The association between subjective caregiver burden and socio-demographic factors, objective burden, and health-related quality of life was analyzed in a population of 865 Dutch informal caregivers, using multiple linear regression analysis. Controlling for other factors in the analysis, we found that caring for a recipient with mental illness or a combination of mental and somatic illness was associated with an extra subjective caregiver burden (measured by Caregiver Strain Index). Objective burden, in terms of more than 50 hours of care provision per week, less than three years of caregiving, or living together with the care recipients was associated with higher subjective caregiver burden. Other factors associated with higher subjective caregiver burden were being partners or a child of care recipient, having a paid job, a low health-related quality of life (EQ-5D), or having an illness. This study suggests that caregivers to care recipients with a mental and especially a combination of mental and somatic illnesses have a higher subjective caregiver burden compared with caregivers to care recipients with a somatic illness. Because the study is not representative of all caregivers, more research focusing on identifying and contacting informal caregivers is needed to confirm the result.

Caregiver Burden, Care Recipient Depressive Symptomology, and Social Exchange: Does Race Matter?

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Ejem, Deborah; Bauldry, Shawn; Bakitas, Marie; Drentea, Patricia

2018-04-01

Informal caregivers play a vital role in supporting seriously ill patients. However, informal caregiving is burdensome and can lead to negative health outcomes for the caregiver and the care recipient. The study's aim was to evaluate relationships among caregiver burden, care recipient depressive symptomology, and race. Guided by the social exchange perspective, we examined cross-sectional dyadic data from the National Long-Term Care Survey (N = 1279). Using ordinal logistic regression, we found that higher caregiver-reported objective burden was associated with higher care recipient depressive symptoms ( P exchange of the social good "helpful company" with a caregiver. These findings illustrate the importance of supporting reciprocal exchange as a promising component of maintaining balanced caregiver-care recipient relationships among black older adults and their informal caregivers.

The burden experienced by family caregivers of patients with ...

African Journals Online (AJOL)

BACKGROUND: Caring for patients with chronic medical and psychiatric disorders is associated with significant burden. However little is known about the burden experience by caregivers of patients with epilepsy in Nigeria. The objective of this study, therefore, was to assess the level and correlates of burden among ...

Parental burden, coping, and family functioning in primary caregivers of children with Joubert syndrome.

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Luescher, J L; Dede, D E; Gitten, J C; Fennell, E; Maria, B L

1999-10-01

Children with Joubert syndrome have physical and intellectual disabilities. The purpose of this study was to assess the impact of Joubert syndrome on parental burden, coping, and family functioning. Forty-nine primary caregivers were surveyed. Forty-three primary caregivers were mothers and six were fathers; their mean age was 34 years. The following measures were used: Beck Depression Inventory, Child Development Inventory, Caregiver Strain Index, Family Assessment Device, and Ways of Coping Checklist-Revised. The data show that caregiver burden is not related to the severity of the child's illness, but that caregivers report significant burden. Higher burden was associated with the use of palliative coping methods, and family functioning was problematic. The results of this study suggest that for parents of children with Joubert syndrome, degree of parental burden depends more on the parents' coping skills and the level of family functioning rather than on the degree of the child's impairment. These findings highlight the importance of assessing caregiver burden, as well as decreased family functioning or coping abilities, since these problems often can be managed with psychologic intervention.

Caregiver burden in atypical dementias: comparing frontotemporal dementia, Creutzfeldt-Jakob disease, and Alzheimer's disease.

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Uflacker, Alice; Edmondson, Mary C; Onyike, Chiadi U; Appleby, Brian S

2016-02-01

Caregiver burden is a significant issue in the treatment of dementia and a known contributor to institutionalization of patients with dementia. Published data have documented increased caregiver burden in behavioral variant frontotemporal dementia (bvFTD) compared to Alzheimer's disease (AD). Another atypical dementia with high-perceived caregiver burden is sporadic Creutzfeldt-Jakob disease (sCJD), but no formal studies have assessed this perception. The aim of this study was to compare caregiver burden across atypical dementia etiologies. 76 adults with atypical dementia (young-onset AD [YOAD], bvFTD, language variant FTD [lvFTD], and sCJD) were administered an abbreviated version of the Zarit Burden Interview (ZBI), Neuropsychiatric Inventory (NPI-Q), and other assessment instruments during a five-year time period at Johns Hopkins Hospital (JHH). A Cox regression model examined differences between disease categories that impact mean ZBI scores. Mean ZBI scores were significantly different between dementia etiologies, with bvFTD and sCJD having the highest caregiver burden (p = 0.026). Mean NPI-Q caregiver distress scores were highest in bvFTD and sCJD (p = 0.002), with sCJD and bvFTD also having the highest number of endorsed symptom domains (p = 0.012). On regression analyses, an interactive variable combining final diagnosis category and NPI-Q total severity score demonstrated statistically significant differences in mean ZBI scores for sCJD and bvFTD. This study demonstrates that bvFTD and sCJD have increased levels of caregiver burden, NPI-Q caregiver distress, total severity scores, and number of endorsed symptom domains. These results suggest that higher caregiver burden in bvFTD and sCJD are disease specific and possibly related to neuropsychiatric symptoms.

Associations between advanced cancer patients' survival and family caregiver presence and burden.

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Dionne-Odom, J Nicholas; Hull, Jay G; Martin, Michelle Y; Lyons, Kathleen Doyle; Prescott, Anna T; Tosteson, Tor; Li, Zhongze; Akyar, Imatullah; Raju, Dheeraj; Bakitas, Marie A

2016-05-01

We conducted a randomized controlled trial (RCT) of an early palliative care intervention (ENABLE: Educate, Nurture, Advise, Before Life Ends) for persons with advanced cancer and their family caregivers. Not all patient participants had a caregiver coparticipant; hence, we explored whether there were relationships between patient survival, having an enrolled caregiver, and caregiver outcomes prior to death. One hundred and twenty-three patient-caregiver dyads and 84 patients without a caregiver coparticipant participated in the ENABLE early versus delayed (12 weeks later) RCT. We collected caregiver quality-of-life (QOL), depression, and burden (objective, stress, and demand) measures every 6 weeks for 24 weeks and every 3 months thereafter until the patient's death or study completion. We conducted survival analyses using log-rank and Cox proportional hazards models. Patients with a caregiver coparticipant had significantly shorter survival (Wald = 4.31, HR = 1.52, CI: 1.02-2.25, P = 0.04). After including caregiver status, marital status (married/unmarried), their interaction, and relevant covariates, caregiver status (Wald = 6.25, HR = 2.62, CI: 1.23-5.59, P = 0.01), being married (Wald = 8.79, HR = 2.92, CI: 1.44-5.91, P = 0.003), and their interaction (Wald = 5.18, HR = 0.35, CI: 0.14-0.87, P = 0.02) were significant predictors of lower patient survival. Lower survival in patients with a caregiver was significantly related to higher caregiver demand burden (Wald = 4.87, CI: 1.01-1.20, P = 0.03) but not caregiver QOL, depression, and objective and stress burden. Advanced cancer patients with caregivers enrolled in a clinical trial had lower survival than patients without caregivers; however, this mortality risk was mostly attributable to higher survival by unmarried patients without caregivers. Higher caregiver demand burden was also associated with decreased patient survival. © 2016 The Authors. Cancer Medicine published by

Deep brain stimulation for patients with Parkinson's disease: Effect on caregiver burden.

Science.gov (United States)

Crespo-Burillo, J A; Rivero-Celada, D; Saenz-de Cabezón, A; Casado-Pellejero, J; Alberdi-Viñas, J; Alarcia-Alejos, R

2018-04-01

Our aim is to assess the burden on caregivers of patients with Parkinson's disease treated with deep brain stimulation (DBS) compared to those caring for patients at advanced stages and undergoing other treatments. We have also assessed the variables associated with presence of caregiver overload. We included consecutive patients with Parkinson's disease treated with DBS. Our control group included patients in advanced stages of Parkinson's disease undergoing other treatments. Patients were assessed with the following scales: UPDRS-II, UPDRS-III, UPDRS-IV, Hoehn and Yahr, Schwab & England, Barthel, PDQ-39, MoCA, Apathy Evaluation Scale, HADS, and the abbreviated QUIP. Caregiver burden was evaluated with the Zarit caregiver burden interview and their moods were assessed with the HADS scale. We included 11 patients treated with DBS and 11 with other treatments. For patients treated with DBS, we observed a better quality of life according to the PDQ-39 questionnaire (P=.028), and a lower score on the HADS anxiety subscale (P=.010). Caregiver overload was observed in 54.5% of the caregivers of patients in both groups (P=1.000); Zarit scores were similar (P=.835). Caregiver overload was associated with higher scores on the caregiver's Apathy Evaluation Scale (P=.048) and on the HADS anxiety subscale (P=.006). According to our results, treatment with DBS is not associated with lower caregiver burden. Apathy in patients and anxiety in caregivers are factors associated with the appearance of overload. Copyright © 2016 Sociedad Española de Neurología. Publicado por Elsevier España, S.L.U. All rights reserved.

Coping, subjective burden and anxiety among family caregivers of older dependents.

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del-Pino-Casado, Rafael; Pérez-Cruz, Margarita; Frías-Osuna, Antonio

2014-12-01

To investigate relationships between anxiety and stressors,coping and subjective burden and to contribute to defining factors related to anxiety among family caregivers of older dependents. Despite the studies analysing factors related to anxiety in caregivers, there is not enough evidence about this issue. Cross-sectional design. Data from 140 family caregivers (convenience sample) were analysed using descriptive statistics, correlation coefficients and path analysis. Socio-demographic data and several scales (Barthel Index, Short Portable Mental Status Questionnaire, Cummings Neuropsychiatric Inventory, Brief COPE, Caregiver Strain Index and Hamilton Anxiety Rating Scale) were used to collect data. Stressors (psychiatric and psychological symptoms and number of assisted activities of daily living), emotion-focused coping, dysfunctional coping and subjective burden were related to greater anxiety. Subjective burden mediated the effects of psychiatric and psychological symptoms on anxiety and partially mediated the effects of dysfunctional coping on anxiety. Stressors, dysfunctional coping and subjective burden were identified as factors related to anxiety. The mediating role of subjective burden in the relationship between dysfunctional coping and anxiety was supported. The effect of dysfunctional coping on anxiety was independent of the stressors. These conclusions justify several recommendations regarding nursing interventions for family caregivers of older dependents: (1) stressors,dysfunctional coping and subjective burden can be used in clinical practice for early detection of and early intervention for anxiety; (2) to prevent subjective burden and anxiety,approach-coping skills should be promoted through interventions such as problem-solving,positive reappraisal, assertiveness and control of negative thoughts; (3) these interventions for dysfunctional coping should be systematically developed for individuals with dysfunctional coping regardless of the level

A comparative study to identify factors of caregiver burden between baby boomers and post baby boomers: a secondary analysis of a US online caregiver survey.

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Kim, Heejung; Lee, Sangeun; Cheon, Jooyoung; Hong, Soyun; Chang, Mido

2018-05-02

Baby boomers' position in the caregiving context is shifting from caregiver to care recipient as the population ages. While the unique characteristics of baby boomer caregivers are well established in caregiving literature, there is limited information about the next caregiving group after the baby boomers. In this study, the sociodemographic and caregiving-related characteristics of the two generations are compared and specific factors contributing to caregiver burden between baby boomer and post baby boomer caregivers are identified. This cross-sectional and correlational study used secondary analysis of data from the National Alliance for Caregiving and the American Association of Retired Persons. A structured online survey was conducted in 2014 with randomly selected samples (n = 1069) in the United States focusing on sociodemographics, caregiving-related characteristics, and burden of care. Descriptive statistics, multivariate linear regression analyses, and Steiger's Z-test were used to identify group differences in multivariate factors related to caregiver burden in two generational groups. Baby boomers and post baby boomers experienced caregiver burden to a similar degree. Caregiving-related factors are more likely to increase burden of care than sociodemographics in both groups. Caregiving without choice and spending longer hours on caregiving tasks were common factors that increased the burden in both generational groups (all p values baby boomer caregivers reported additional challenges, such as unemployment during caregiving, the dual responsibility of both adult and child care, and a family relationship with the care recipient. Due to the aging population of baby boomers, post baby boomers encounter different challenges related to caregiving burden, which is often considered an additional workload in their life course. Current policy and program tailored to baby boomers should be re-designed to meet the different needs of emerging caregivers

The factors affecting the burden of care of informal caregivers of the elderly in Tehran

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Hosein Rohani

2015-03-01

Full Text Available Background: Rapid growth of the elderly population followed by an increase in long term care will lead to a rise in the health costs of the elderly and the healthcare burden of their caregivers. This study was carried out to examine the factors affecting the burden of care for informal caregivers in order to design better interventional programs and to reduce this burden and unwanted consequences. Methods: This cross-sectional study was conducted in retirement associations of Tehran in 2012. The study population included 200 elderly and 200 caregivers. The instruments for data collection included two questionnaires about the elderly and their caregivers that were completed in a face-to-face interview. The data were analyzed by SPSS-16 software using multiple linear regression. Results: About 60% of the elderly and 34% of caregivers were female. Burden of care was low in 70%, moderate in 11.5%, and high in 18.5% of caregivers. Female caregivers were suffering 1.42 unit more burden of care than male caregivers (P= 0.027. Also, there was a significant association between the burden of care of untrained caregivers and instrumental activities of the daily living of the elderly (P< 0.001, daily activity of the elderly (P<0.001 and adequacy of wage (= 0.001. Conclusion: According to the results, being a female caregiver, daily physical activity of the elderly, instrumental activities of the daily living of the elderly, and adequacy of the wage were the most important factors in increasing the burden of care for caregivers of the elderly.

Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: a comparison of CSI, CRA, SCQ and self-rated burden.

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van Exel, N Job A; Scholte op Reimer, Wilma J M; Brouwer, Werner B F; van den Berg, Bernard; Koopmanschap, Marc A; van den Bos, Geertrudis A M

2004-03-01

To compare the feasibility, convergent and clinical validity of three commonly used burden scales: Caregiver Strain Index (CSI), Caregiver Reaction Assessment (CRA) and Sense of Competence Questionnaire (SCQ), with a self-developed single question on self-rated burden (SRB). Stroke patients receiving support from an informal caregiver (n = 148) and their caregivers were followed up to six months after stroke. Feasibility was assessed with several measures of missing values. Convergent validity was assessed on the basis of the correlation patterns between the burden scales, and clinical validity through evaluation of expected associations between levels of burden and explanatory patients' and caregivers' characteristics. Missing values were less often observed on CSI and SRB than SCQ and CRA. Significant correlation coefficients (p CRA. Evidence for clinical validity was strongest for CSI and SRB, based on associations between higher burden scores and patients' disability, and patients' and caregivers' poor level of health-related quality of life (all p CRA. SRB could be used for quick screening of caregivers at risk. CSI is indicated for further diagnosis of the burden of informal caregivers.

Psychometric properties of Persian version of the Caregiver Burden Scale in Iranian caregivers of patients with spinal cord injury.

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Farajzadeh, Ata; Akbarfahimi, Malahat; Maroufizadeh, Saman; Rostami, Hamid Reza; Kohan, Amir Hassan

2018-02-01

To investigate the psychometric properties of the Persian version of Caregiver Burden Scale (CBS) in caregivers of patients with spinal cord injury. This is a cross-sectional study. After a forward-backward translation, the CBS was administered to 110 caregivers of patients with spinal cord injury (men = 60, women = 50). Factor structure was evaluated by confirmatory factor analysis. The Internal consistency and test-retest reliability of the CBS were examined using Cronbach's α and the intraclass correlation coefficient, respectively. Construct validity was assessed by examining the relationship among CBS and the World Health Organization Quality of Life, and the Beck Depression Inventory. The results of confirmatory factor analysis provided support for a five-factor model of CBS. All subscales of CBS revealed acceptable internal consistency (0.698-0.755), except for environment subscale (0.559). The CBS showed adequate test-retest reliability for its subscales (0.745-0.900). All subscales of CBS significantly correlated with both Beck Depression Inventory and World Health Organization Quality of Life, confirming construct validity. The Persian version of the CBS is a valid and reliable measure for assessing burden of care in caregivers of patients with spinal cord injury. Implications for Rehabilitation Spinal cord injury leads to depression, high levels of stress and diminished quality of life due to the high physical, emotional, and social burdens in caregivers. Persian version of the Caregiver Burden Scale is a valid and reliable tool for assessing burden in Iranian caregivers of patients with spinal cord injury.

Caregiver burden, productivity loss, and indirect costs associated with caring for patients with poststroke spasticity

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Ganapathy, Vaidyanathan; Graham, Glenn D; DiBonaventura, Marco D; Gillard, Patrick J; Goren, Amir; Zorowitz, Richard D

2015-01-01

Objective Many stroke survivors experience poststroke spasticity and the related inability to perform basic activities, which necessitates patient management and treatment, and exerts a considerable burden on the informal caregiver. The current study aims to estimate burden, productivity loss, and indirect costs for caregivers of stroke survivors with spasticity. Methods Internet survey data were collected from 153 caregivers of stroke survivors with spasticity including caregiving time and difficulty (Oberst Caregiver Burden Scale), Work Productivity and Activity Impairment measures, and caregiver and patient characteristics. Fractional logit models examined predictors of work-related restriction, and work losses were monetized (2012 median US wages). Results Mean Oberst Caregiver Burden Scale time and difficulty scores were 46.1 and 32.4, respectively. Employed caregivers (n=71) had overall work restriction (32%), absenteeism (9%), and presenteeism (27%). Caregiver characteristics, lack of nursing home coverage, and stroke survivors’ disability predicted all work restriction outcomes. The mean total lost-productivity cost per employed caregiver was US$835 per month (>$10,000 per year; 72% attributable to presenteeism). Conclusion These findings demonstrate the substantial burden of caring for stroke survivors with spasticity illustrating the societal and economic impact of stroke that extends beyond the stroke survivor. PMID:26609225

[Cross-sectional study of informal caregiver burden and the determinants related to the care of dependent persons].

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Rodríguez-González, Ana María; Rodríguez-Míguez, Eva; Duarte-Pérez, Ana; Díaz-Sanisidro, Eduardo; Barbosa-Álvarez, Ángel; Clavería, Ana

2017-03-01

To describe the burden of informal carers of dependent people and to identify related variables. Descriptive observational cross-sectional study. Primary Health Care in the southern area of Pontevedra. 97 caregivers of dependent persons. We collected socioeconomic data and health conditions from caregivers and dependent persons, time spent on the daily care and caregiver burden (Zarit abbreviate) through a personal interview. Besides the description of the sample-including their burden level-, a contrast mean was used to identify characteristics that influenced in punctuation of Zarit scale. A logistic regression was used to analyse characteristics that increase the likelihood to experiment burden. 61.9% of caregivers are subject to intense burden. The item on the scale which contributes most to the caregiver burden is the lack of time for oneself, followed by the negative effects of interpersonal relationships. Contrast means shows that degree of relationship, number of care hours, caregiver health and aggressiveness of dependent persons produce significant differences in Zarit scale. Physic and psychological health of caregivers and aggressiveness of dependent persons is associated with the likelihood of developing caregiver burden. Informal caregivers of dependent persons show a high level of burden, both related to their characteristics and those of the dependent persons. Caregiver burden rethinks the need for public policies focused on dependence to adopt an integrative caregiver-dependent vision. Copyright © 2016 Elsevier España, S.L.U. All rights reserved.

Caregiver burden, productivity loss, and indirect costs associated with caring for patients with poststroke spasticity

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Ganapathy V

2015-11-01

Full Text Available Vaidyanathan Ganapathy,1 Glenn D Graham,2 Marco D DiBonaventura,3 Patrick J Gillard,1 Amir Goren,3 Richard D Zorowitz41Allergan, Irvine, CA, USA; 2Department of Veterans Affairs, San Francisco, CA, USA; 3Health Outcomes Practice, Kantar Health, New York, NY, USA; 4Johns Hopkins Bayview Medical Center, Baltimore, MD, USAObjective: Many stroke survivors experience poststroke spasticity and the related inability to perform basic activities, which necessitates patient management and treatment, and exerts a considerable burden on the informal caregiver. The current study aims to estimate burden, productivity loss, and indirect costs for caregivers of stroke survivors with spasticity.Methods: Internet survey data were collected from 153 caregivers of stroke survivors with spasticity including caregiving time and difficulty (Oberst Caregiver Burden Scale, Work Productivity and Activity Impairment measures, and caregiver and patient characteristics. Fractional logit models examined predictors of work-related restriction, and work losses were monetized (2012 median US wages.Results: Mean Oberst Caregiver Burden Scale time and difficulty scores were 46.1 and 32.4, respectively. Employed caregivers (n=71 had overall work restriction (32%, absenteeism (9%, and presenteeism (27%. Caregiver characteristics, lack of nursing home coverage, and stroke survivors’ disability predicted all work restriction outcomes. The mean total lost-productivity cost per employed caregiver was US$835 per month (>$10,000 per year; 72% attributable to presenteeism.Conclusion: These findings demonstrate the substantial burden of caring for stroke survivors with spasticity illustrating the societal and economic impact of stroke that extends beyond the stroke survivor.Keywords: burden, caregiver, productivity, spasticity, stroke

Family caregiver burden: the burden of caring for lung cancer patients according to the cancer stage and patient quality of life

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Eliana Lourenço Borges

Full Text Available ABSTRACT Objective: Patients with lung cancer experience different feelings and reactions, based on their family, social, cultural, and religious backgrounds, which are a source of great distress, not only for the patients but also for their family caregivers. This study aimed to evaluate the impact that lung cancer stage and quality of life (QoL of lung cancer patients have on caregiver burden. Methods: This was a prospective cross-sectional study. Consecutive patient-caregiver dyads were selected and asked to complete the Hospital Anxiety and Depression Scale and the Medical Outcomes Study 36-item ShortForm Health Survey (SF-36. Family caregivers also completed the Caregiver Burden Scale. Group-based modeling was used in order to identify patients with early- or advanced-stage cancer (IA to IIIA vs. IIIB to IV plus non-impaired or impaired QoL (SF36 total score > 50 vs. ≤ 50. Patient-caregiver dyads were stratified into four groups: early-stage cancer+non-impaired QoL; advanced-stage cancer+non-impaired QoL; early-stage cancer+impaired QoL; and advanced-stage cancer+impaired QoL. Results: We included 91 patient-caregiver dyads. The majority of the patients were male and heavy smokers. Family caregivers were younger and predominantly female. The burden, QoL, level of anxiety, and level of depression of caregivers were more affected by the QoL of the patients than by their lung cancer stage. The family caregivers of the patients with impaired QoL showed a higher median burden than did those of the patients with non-impaired QoL, regardless of disease stage. Conclusions: Caregiver burden is more affected by patient QoL than by lung cancer stage.

Concordance of patient and caregiver reports in evaluating quality of life in patients with malignant gliomas and an assessment of caregiver burden

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Jacobs, Daniel I.; Kumthekar, Priya; Stell, Becky V.; Grimm, Sean A.; Rademaker, Alfred W.; Rice, Laurie; Chandler, James P.; Muro, Kenji; Marymont, MaryAnne; Helenowski, Irene B.; Wagner, Lynne I.; Raizer, Jeffrey J.

2014-01-01

Background Given the neurocognitive impairment experienced by many patients with malignant gliomas, caregiver reports can be critical in assessing the quality of life (QOL) of these patients. In this study, we explored whether assessment of patient QOL by the primary caregiver shows concordance with the patient's self-reported QOL, and we quantified the burden faced by caregivers. Methods QOL of 45 patients was evaluated by both the patient and primary caregiver on 3 or more separate occasions using the Functional Assessment of Cancer Therapy-Brain (FACT-Br) instrument, and concordance between the 2 reports was evaluated. Caregiver burden was measured using the Caregiver Quality of Life Index-Cancer (CQOL-C) instrument. Results Overall, good concordance was observed between the patient and caregiver FACT-Br reports (intraclass correlation coefficient = 0.74). Patient-reported FACT-Br scores were 4.75 (95% CI, 1.44–8.05) points higher than paired caregiver reports on the 200-point scale (P = .008); however, this difference did not achieve clinical significance. Caregiver burden, as measured by the CQOL-C, was significantly greater among caregivers in this study than those previously reported for caregivers of patients with lung, breast, or prostate cancer (P < .001). Conclusions Despite minor discrepancies in caregiver assessments of patient QOL relative to patient self-reports, our results suggest that the caregiver assessments can serve as adequate proxies for patient reports. Our results also illustrate the particularly heavy burden faced by caregivers of patients with malignant glioma. Further research into both of these areas is warranted. PMID:26034616

High burden and frailty: association with poor cognitive performance in older caregivers living in rural areas

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Allan Gustavo Brigola

2017-12-01

Full Text Available Abstract Introduction: Older caregivers living in rural areas may be exposed to three vulnerable conditions, i.e., those related to care, their own aging, and their residence context. Objective: To analyze the association of burden and frailty with cognition performance in older caregivers in rural communities. Method: In this cross-sectional survey, 85 older caregivers who cared for dependent elders were included in this study. Global cognition (Addenbrooke's Cognitive Examination – Revised; Mini Mental State Examination, burden (Zarit Burden Interview and frailty (Fried's frailty phenotype were assessed. All ethical principles were observed. Results: Older caregivers were mostly women (76.7%; mean age was 69 years. Cognitive impairment was present in 15.3%, severe burden in 8.2%, frailty in 9.4%, and pre-frailty in 52.9% of the older caregivers. More severely burdened or frail caregivers had worse cognitive performance than those who were not, respectively (ANOVA test. Caregivers presenting a high burden level and some frailty degree (pre-frail or frail simultaneously were more likely to have a reduced global cognition performance. Conclusion: A significant number of older caregivers had low cognitive performance. Actions and resources to decrease burden and physical frailty may provide better cognition and well-being, leading to an improved quality of life and quality of the care provided by the caregivers.

Burden, resilience and coping in caregivers of patients with interstitial lung disease.

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Shah, R J; Collard, H R; Morisset, J

Prior work has described the experience of caregiving in idiopathic pulmonary fibrosis, but the effect on caregivers in interstitial lung disease (ILD) has not been explored. Describe the burden, resilience, and health related quality of life (HRQoL) of caregivers of people with ILD. In a mixed methods study, ILD caregivers completed questionnaires and participated in focus groups. A qualitative thematic analysis of the focus group transcripts was conducted. Thirty seven caregivers completed the survey, and 15 participated in the focus groups. 65% were female; the average age was 66 (SD = 13). The mean Short Form-36 role emotional and mental health scores were 18 (SD = 4) and 46 (SD = 7). The focus groups identified 4 major themes: emotional burden, changes in relationship, coping strategies, and unmet needs of caregivers. Caregiving for patients with ILD significantly impairs HRQoL, particularly, emotional health. Increasing resources could improve the caregiving experience in ILD. Copyright © 2018 Elsevier Inc. All rights reserved.

The moderating effect of religiosity on caregiving burden and depressive symptoms in caregivers of patients with dementia.

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Yoon, Kyung Hee; Moon, Yoo Sun; Lee, Yunhwan; Choi, Seong Hye; Moon, So Young; Seo, Sang Won; Park, Kyung Won; Ku, Bon D; Han, Hyun Jeong; Park, Kee Hyung; Han, Seol-Heui; Kim, Eun-Joo; Lee, Jae-Hong; Park, Sun A; Shim, Yong S; Kim, Jong Hun; Hong, Chang Hyung; Na, Duk L; Ye, Byoung Seok; Kim, Hee Jin; Moon, Yeonsil; Lee, Sang Soo; Kim, Do Hoon

2018-01-01

This study explored whether religiosity/spirituality has a protective role against negative caregiving outcomes, in a large multicenter nationwide sample of caregivers of patients with dementia in South Korea. Additionally, this study was the first to examine whether religiosity/spirituality could affect caregiving outcomes according to the various religious affiliations of caregivers. The study was conducted on a sample of 476 caregivers of patients with dementia participated in the Clinical Research Center for Dementia of South Korea (CREDOS). We examined the moderating effect of each of the three dimensions of religiosity/spirituality (organizational religious activity, ORA; non-organizational religious activity, NORA; intrinsic religiosity, IR) on the relationship between activities of daily living (ADL) of patients with dementia and caregiving burden and depressive symptoms of caregivers, using a series of hierarchical regression analyses. In addition, these analyses were conducted according to the religious affiliations of the caregivers. ORA, NORA, and IR of religiosity/spirituality alleviated the effect of ADL of patients on caregiving burden. ORA and IR moderated the relationship between ADL of patients and depressive symptoms of caregivers. These moderating effects of religiosity on caregiving outcomes were different according to various religious groups. We have identified religiosity/spirituality as a protective factor for caregivers of patients with dementia. The sub-dimensions of religiosity as moderators were different by religious affiliations of caregivers. Further studies are needed to investigate the specific religiosity-related factors which could positively impact the mental health of the caregivers of patients with dementia by religions.

Coping and subjective burden in caregivers of older relatives: a quantitative systematic review.

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Del-Pino-Casado, Rafael; Frías-Osuna, Antonio; Palomino-Moral, Pedro A; Pancorbo-Hidalgo, Pedro L

2011-11-01

This article is a report on a review of the effect of coping strategies on subjective burden in informal caregivers of older adults. Informal care has negative effects on caregivers' health, and subjective burden is one of these. It has been linked with other effects (e.g. anxiety and depression). Thus, greater prevention of subjective burden will mean increased prevention of these effects. To achieve this, identification of factors related to subjective burden is essential. Electronic databases and manual searches of scientific journals. A quantitative systematic review was conducted including: (a) original studies (b) that related caregiver subjective burden to coping strategies compatible with the classifications of Lazarus & Folkman or Moos et al. (c) in informal caregivers of older relatives. The searches ranged from the first year included in each database until January 2010. After quality appraisal, ten studies were included; these, care-recipients living at home and having cognitive impairment. Four coping categories have been related to subjective burden: problem-focused, emotion-focused, approach and avoidance. Interesting results were only found for avoidance coping (positive association). In other categories, results were heterogeneous (problem-focused and approach) or we found few valid studies (emotion-focused). We found some evidence for a positive association between avoidance coping and subjective burden in home caregivers of older relatives with cognitive impairment. It is probable that avoidance coping either mediates or moderates the relationship between subjective burden and its outcomes, or that avoidance coping precedes subjective burden, which in turn leads to the coping outcomes. In both situations, avoidance coping is an ineffective coping. © 2011 Blackwell Publishing Ltd.

[Relationship of the effectiveness of care management services and burdens of primary family caregivers].

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Lee, Chia-Ling; Liu, Li-Fan; Chen, Shuh-Sin; Lin, Hsiu-Chun

2014-02-01

In Taiwan, long-term care management centers hold primary responsibility for administering long-term care services, assisting with long-term care placements, and sharing the care burden with family caregivers in need. Research into the effectiveness of current care management services and the effectiveness of these services in reducing care burdens remains limited. This study investigates the relationship among care management center service effectiveness, care management personnel, and burdens in relation to the provision of care services from the prospective of caregivers. A purposive sampling method and structured questionnaire survey were used to conduct telephone interviews with 154 home caregivers who had been transferred from care management centers to homecare service centers. Participants expressed overall satisfaction with care management centers and with the services provided by these centers. Satisfaction toward the care managers' professional competence was associated with lower physical burden for caregivers. Participants' psychological and social burdens were associated with overall satisfaction with the care management centers and their satisfaction with the services provided by care managers. The implementation of care management services has improved satisfaction. However, center services remain inadequate to reduce the psychological and social burdens of caregivers. Greater focus on these two aspects will be critical to the successful implementation of the proposed intensive care management model and multiple services intervention in order to meet the complex care needs of home service recipients and their primary caregivers.

What really matters: An inquiry into the relative importance of dimensions of informal caregiver burden

NARCIS (Netherlands)

Exel, N.J.A. van; Brouwer, W.B.F.; Berg, B. van den; Koopmanschap, M.A.; Bos, G.A.M. van den

2004-01-01

Objective: Prevailing measures of subjective caregiver burden either have no overall summary score or do not consider the relative importance caregivers attach to different dimensions of burden. Our aim was to assess which dimensions informal caregivers perceive as being important to their overall

What really matters: an inquiry into the relative importance of dimensions of informal caregiver burden

NARCIS (Netherlands)

van Exel, N. J. A.; Brouwer, W. B. F.; van den Berg, B.; Koopmanschap, M. A.; van den Bos, G. A. M.

2004-01-01

Objective: Prevailing measures of subjective caregiver burden either have no overall summary score or do not consider the relative importance caregivers attach to different dimensions of burden. Our aim was to assess which dimensions informal caregivers perceive as being important to their overall

Study of Burden Among Caregivers of Children with Cleft Lip and Palate

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Ana Paula Ribeiro Razera

Full Text Available Abstract: The psychological and physical health of caregivers of children with cleft lip and palate can be strongly influenced by the child’s condition and behavior, and care required by the treatment. This study’s objective was to identify overload levels among these caregivers. A total of 100 caregivers, whose children were in the perioperative period of cheiloplasty and/or palatoplasty, were interviewed using the Scale Burden Interview. The data were analyzed quantitatively. Moderate and moderate severe burden levels were identified in 43% of the sample. The mothers of children aged around 12 months presented significantly higher overload. The results indicate that children in this developmental stage present greater care demand because they seek autonomy in locomotion, explore objects in their surrounding environment, and continually request communicative and affective-social interaction with their reference to greater attachment (the caregiver, which may have contributed to higher burden.

Dementia Caregiver Burden: a Research Update and Critical Analysis.

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Cheng, Sheung-Tak

2017-08-10

This article provides an updated review of the determinants of caregiver burden and depression, with a focus on care demands and especially the differential effects of various neuropsychiatric symptoms or symptom clusters. Moreover, studies on caregivers for frontotemporal and Lewy body dementias were referred to in order to identify differences and similarities with the mainstream literature based largely on Alzheimer caregivers. As a group, neuropsychiatric symptoms are most predictive of caregiver burden and depression regardless of dementia diagnosis, but the effects appear to be driven primarily by disruptive behaviors (e.g., agitation, aggression, disinhibition), followed by delusions and mood disturbance. Disruptive behaviors are more disturbing partly because of the adverse impact on the emotional connection between the caregiver and the care-recipient and partly because they exacerbate difficulties in other domains (e.g., caring for activities of daily living). In behavioral variant frontotemporal dementia, not only are these disruptive behaviors more prominent but they are also more disturbing due to the care-recipient's insensitivity to others' feelings. In Lewy body dementia, visual hallucinations also appear to be distressing. The disturbing nature of disruptive behaviors cuts across dementia conditions, but the roles played by symptoms that are unique or particularly serious in a certain condition need to be explored further.

Resilience and burden in caregivers of older adults: moderating and mediating effects of perceived social support.

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Ong, Hui Lin; Vaingankar, Janhavi Ajit; Abdin, Edimansyah; Sambasivam, Rajeswari; Fauziana, Restria; Tan, Min-En; Chong, Siow Ann; Goveas, Richard Roshan; Chiam, Peak Chiang; Subramaniam, Mythily

2018-01-31

The burden of caring for an older adult can be a form of stress and influence caregivers' daily lives and health. Previous studies have reported that resilience and social support play an important role in reducing physical and psychological burden in caregivers. Thus, the present study aimed to examine whether perceived social support served as a possible protective factor of burden among caregivers of older adults in Singapore using moderation and mediation effects' models. We conducted a cross-sectional study with 285 caregivers providing care to older adults aged 60 years and above who were diagnosed with physical and/or mental illness in Singapore. The Connor-Davidson Resilience Scale (CD-RISC) was used to measure resilience and burden was measured by the Zarit Burden Interview (ZBI). The Multidimensional Scale of Perceived Social Support (MSPSS) was used to measure perceived social support. Hayes' PROCESS macro was used to test moderation and mediation effects of perceived social support in the relationship between resilience and burden after controlling for sociodemographic variables. Indirect effects were tested using bootstrapped confidence intervals (CI). The mean scores observed were CD-RISC: 70.8/100 (SD = 15.1), MSPSS: 62.2/84 (SD = 12.2), and ZBI: 23.2/88 (SD = 16.0) respectively. While perceived social support served as a full mediator between resilience and caregiver burden (β = - 0.14, 95% CI -0.224 to - 0.072, p social support mediates the association between resilience and caregiver burden among caregivers of older adults in Singapore. It is crucial for healthcare professionals, particularly those who interact and deliver services to assist caregivers, to promote and identify supportive family and friends' network that may help to address caregiver burden.

The Objective and Subjective Caregiving Burden and Caregiving Behaviours of Parents of Adolescents with Anorexia Nervosa.

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Rhind, Charlotte; Salerno, Laura; Hibbs, Rebecca; Micali, Nadia; Schmidt, Ulrike; Gowers, Simon; Macdonald, Pamela; Goddard, Elizabeth; Todd, Gillian; Tchanturia, Kate; Lo Coco, Gianluca; Treasure, Janet

2016-07-01

The study aimed to examine caregiving burden and levels of distress, accommodating behaviours, expressed emotion (EE) and carers' skills, in parents of adolescents with anorexia nervosa. A semi-structured interview assessed the objective burden (time spent across caregiving tasks) in parents (n = 196) of adolescents (n = 144) receiving outpatient treatment for anorexia nervosa. Subjective burden (carers' distress), accommodating behaviours, EE and carers' skills were measured by self-report. Mothers, on average, spent 2.5 h/day of care, mainly providing food and emotional support, compared with 1 h/day by fathers. The level of distress and accommodating behaviour was significantly lower in fathers than in mothers. Accommodating behaviours mediated the relationship between objective burden and subjective burden in mothers, whereas EE and carers' skills did not mediate this relationship for either parent. The objective burden for most mothers is high. In order to reduce subjective burden, it may be helpful to target accommodating behaviours. ISRCTN83003225 - Expert Carers Helping Others (ECHO). Copyright © 2016 John Wiley & Sons, Ltd and Eating Disorders Association. Copyright © 2016 John Wiley & Sons, Ltd and Eating Disorders Association.

The Burden Endured by Caregivers of Patients With Morquio A Syndrome

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Christian J. Hendriksz MD; Christine Lavery; Mahmut Coker MD; Sema Kalkan Ucar MD; Mohit Jain PhD; Lisa Bell PhD; Christina Lampe MD

2014-01-01

This international survey performed by direct personal interview or mail evaluated the global burden among primary caregivers of patients with Morquio A syndrome. Collected outcomes included self-reported time spent on caregiving, proportion of daily activities (from the Mucopolysaccharidosis Health Assessment Questionnaire) requiring caregiver assistance, and how the patient’s age and wheelchair use affect these. In addition, the impact of caregiving on the caregivers’ relationship with fami...

Factors associated with caregiver burden among pharmacotherapy-treated children/adolescents with ADHD in the Caregiver Perspective on Pediatric ADHD survey in Europe

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Fridman M

2017-02-01

Full Text Available Moshe Fridman,1 Tobias Banaschewski,2 Vanja Sikirica,3 Javier Quintero,4 M Haim Erder,3 Kristina S Chen5 1AMF Consulting, Inc., Los Angeles, CA, USA; 2Department of Child and Adolescent Psychiatry and Psychotherapy, Central Institute of Mental Health, Medical Faculty Mannheim of the University of Heidelberg, Mannheim, Germany; 3Global Health Economics Outcomes Research and Epidemiology, Shire, Wayne, PA, USA; 4Psychiatry Department, Hospital Universitario Infanta Leonor, Complutense University, Madrid, Spain; 5Global Health Economics Outcomes Research and Epidemiology, Shire, Lexington, MA, USA Background: Burden on caregivers of children/adolescents with attention-deficit/hyperactivity disorder (ADHD is multidimensional, but incompletely understood. Objective: To analyze caregiver burden across the concepts of work, social/family life, and parental worry/stress, in relation to selected contributing factors. Methods: The online Caregiver Perspective on Pediatric ADHD survey was fielded in ten European countries. Analysis included children/adolescents (6–17 years who were receiving/had received ADHD pharmacotherapy in the previous 6 months. Caregivers recorded their child’s/adolescent’s symptoms “on”/“off” medication (ie, when the caregiver reported that the child/adolescent forgot/chose not to take medication, before the onset of medication effect, or medication worn off. Effects of ADHD severity, comorbidities, and medication adherence on each burden outcome were assessed (multiple regression models. Results: In total, 2,326 caregivers were included (children/adolescents’ mean age: 11.5 years, 80% male. Caregivers reported missed/altered work, avoiding social activity, increased parental worry/stress, and strain on family life, despite using ADHD pharmacotherapy. Child/adolescent comorbidities and ADHD severity were significantly related to all burden concepts measured; the strongest comorbidity associations were with altered

Caregiver Burden, Spirituality, and Psychological Well-Being of Parents Having Children with Thalassemia.

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Anum, Jawaria; Dasti, Rabia

2016-06-01

The research determined the relationship of caregiving burden, spirituality and psychological well-being of parents of Pakistani thalassemic patients in a crosssectional research design. The sociodemographic form, Montgomery-Borgatta burden measure (Montgomery et al. in Who should care for the elderly? An east-west value divide. World Scientific, River Edge, pp 27-54, 2000), Multidimensional Measure of Islamic Spirituality (Dasti and Sitwat in J Muslim Ment Health 8(2):47-67, 2014. doi: 10.3998/jmmh.10381607.0008.204 ) and Ryff Scale of Psychological Well-being (Ryff in J Pers Soc Psychol 57(6):1069-1081, 1989. doi: 10.1037/0022-3514.57.6.1069 ) were administered on a sample of 80 parents (32 fathers and 48 mothers) recruited from different Thalassemic Centers of Lahore city, Pakistan. Data were analyzed through correlation and mediational analyses. Results indicated that the caregiver burden was negatively correlated with the psychological well-being and the domains of spirituality, while the psychological well-being and spirituality were positively correlated. We identified that the caregiver burden has direct effect on the psychological well-being of the parents and it influences the psychological well-being through the pathway of the two domains of spirituality, i.e., self-discipline and meanness-generosity. These results highlighted the role of spirituality upon the psychological well-being of caregivers, which could be utilized to prevent pathological influences (such as hard feelings, hopelessness, depressed mood, anxiety, and relationship problems) of caregiver burden and enhance psychological well-being through spiritual counseling. Caregivers can work on their well-being and burden by disciplining their lives and forgoing hard feelings toward others.

[Depression and burden on primary caregivers of elderly persons with physical dependence of the UMF 171].

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Navarro-Sandoval, Cristina; Uriostegui-Espíritu, Lizbeth Carlota; Delgado-Quiñones, Edna Gabriela; Sahagún-Cuevas, Minerva Natalia

2017-01-01

According to the National Health and Nutrition Survey of 2012, more than a quarter of older adults (26.9%) have some degree of disability, requiring a primary caregiver to perform basic activities of daily living. The aim is to determine the prevalence of depression and burden on primary caregivers of elderly persons with physical dependence. A descriptive cross-sectional study with non-probability sampling that included the primary caregivers of elderly patients with physical dependence. Barthel scale was applied as a tool to measure the level of physical dependence in elderly patients; while the primary caregivers were applied to the Beck Depression and Zarit scale for assessing the level of caregiver burden. A sample of 76 primary caregivers was calculated and descriptive statistical analysis was performed. Of the 76 primary caregivers, 55.3% were without depression, 32.9% had mild depression, and 11.8% with moderate depression. According to the Zarit scale, 40.8% had no burden, 44.7% had burden light, and 14.5% intense burden. The role of primary caregiver is a stressful task which can interfere with their family health; so our role is to provide care not only to the geriatric dependent patients, but also to their caregiver.

Effect of Educational Program on the Burden of Family Caregivers of Hemodialysis Patients

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Mansoureh Ashghali Farahani

2016-04-01

Full Text Available Background: Studies suggest that family caregivers of hemodialysis patients experience a high level of burden, which could lead to numerous physical and psychological problems. Despite the need for adequate training and support, these caregivers are mostly neglected, and few studies have been performed in this regard. Aim: to evaluate the effect of educational programs on the home care of hemodialysis patients and burden of their family caregivers. Method: This randomized controlled clinical trial was conducted on 76 caregivers of hemodialysis patients referred to Shahid Hasheminejad Hemodialysis Center of Tehran, Iran in 2015.­ Subjects were divided into two groups of intervention and control (n=38. The intervention group received four training sessions on the home care of hemodialysis patients for two weeks, and the control group received routine care. Data were collected using the Caregiver Burden Inventory (CBI at the beginning and six weeks after the intervention­. Data analysis was performed in SPSS V.21 using Chi-square, Fisher’s exact test, independent and paired T-test, and Mann-Whitney U test. Results: In this study, no significant difference was observed between the two groups in terms of demographic characteristics. At the baseline, mean score of caregiver burden in the intervention and control groups was 88.5±11.7 and 84.9±15.1, respectively, and no significant difference was observed between the groups in this regard (P=0.30. Six weeks after the intervention, the results of independent T-test revealed a significant difference between the mean scores of caregiver burden in the intervention (58.7±6.6 and control groups (87.8±11.7 ­(P

Understanding the Burden Experienced by Caregivers of Older Adults Who Use a Powered Wheelchair: A Cross-Sectional Study

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Paula W. Rushton PhD

2017-04-01

Full Text Available Objective: In this study, we aimed to describe the burden of family caregivers providing powered wheelchair-related and overall assistance and test the hypotheses that caregiver burden correlates with participation, wheelchair skills capacity, anxiety, depression, and social support. Methods: Cross-sectional study. Participants included 35 family caregivers of powered wheelchair users. Caregivers were assessed using the Power Mobility Caregiver Assistive Technology Outcome Measure, Late Life Disability Instrument, Wheelchair Skills Test Questionnaire for caregivers, Hospital Anxiety and Depression Scale, and Interpersonal Support Evaluation List–12. Results: The most burdensome powered wheelchair assistance items were providing verbal hints/directions, needing to be nearby, anxiety, and fear that user may be harmed. The most burdensome overall assistance item was feeling limited in recreational/leisure activities. Caregiver burden was significantly correlated with participation limitations, anxiety, depression, and social support. Discussion: Caregivers experience burden for wheelchair-related and overall help, especially psychological burden. Such results have implications for the type of resources required to support family caregivers.

Medical and psychosocial predictors of caregiver distress and perceived burden following traumatic brain injury.

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Davis, Lynne C; Sander, Angelle M; Struchen, Margaret A; Sherer, Mark; Nakase-Richardson, Risa; Malec, James F

2009-01-01

To determine whether caregivers' medical and psychiatric histories, coping style, and social support predict global distress and perceived burden. Correlational, cohort study. A total of 114 caregivers of persons with moderate to severe traumatic brain injury, assessed 1 year postinjury. Ratings of caregivers' medical and psychiatric history; Disability Rating Scale; Ways of Coping Questionnaire; Multidimensional Scale of Perceived Social Support; Brief Symptom Inventory; and Modified Caregiver Appraisal Scale. Caregivers' medical and psychiatric histories predicted global distress, after accounting for education, sex, income, and relationship, as well as disability of the person with injury. Increased use of escape-avoidance as a coping strategy was related to increased distress. Perceived burden was predicted by disability in the person with injury, use of escape-avoidance, and perceived social support. Caregivers' preinjury functioning is more predictive of global distress, whereas the functioning of the person with injury is more predictive of injury-related burden. Caregivers' medical and psychiatric histories are important considerations when targeting interventions; global stress management strategies may be as important as assisting with injury-related issues.

Experienced emotional burden in caregivers: psychometric properties of the Involvement Evaluation Questionnaire in caregivers of brain injured patients

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Geurtsen, Gert J.; Meijer, Ron; van Heugten, Caroline M.; Martina, Juan D.; Geurts, Alexander C. H.

2010-01-01

To examine the psychometric properties (internal consistency, discriminant validity, and responsiveness) of the Involvement Evaluation Questionnaire for Brain Injury measuring emotional burden in caregivers of patients with chronic acquired brain injury. Inception cohort study. Caregivers of chronic

Family functioning in severe brain injuries: correlations with caregivers' burden, perceived social support and quality of life.

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Tramonti, Francesco; Bonfiglio, Luca; Di Bernardo, Carolina; Ulivi, Chiara; Virgillito, Alessandra; Rossi, Bruno; Carboncini, Maria Chiara

2015-01-01

Severe brain injuries have long-term consequences on functional status and psychosocial functioning. Family life can be greatly influenced as well, and features of high caregiver burden can emerge. Although the data on caregivers' distress are constantly increasing, less information is available about the role of family functioning. Thirty caregivers of hospitalised patients with severe brain injuries received questionnaires for the evaluation of caregiver burden, family functioning and perceived social support. A semi-structured interview was performed for the evaluation of quality of life. Family cohesion and adaptability positively correlated with caregivers' quality of life and perceived social support. Partner caregivers' scores were significantly higher on the time-dependent burden than those of sons and daughters, whereas the latter scored higher on the emotional burden.

An exploration of caregiver burden for children with nodding syndrome (lucluc) in Northern Uganda.

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Nakigudde, Janet; Mutamba, Byamah Brian; Bazeyo, William; Musisi, Seggane; James, Okello

2016-07-22

Caregivers of patients with chronic illnesses are often uncompensated for work that is physically demanding, time consuming and emotionally and economically draining. This is particularly true for caregivers of children with nodding syndrome, an emergent neurological disorder of unknown etiology in resource poor settings in Africa. We aimed to explore perceptions of caregivers regarding challenges that a typical caregiver faces when caring for a child with nodding syndrome. We used a qualitative exploratory study design with focus group discussions and in-depth interviews to collect data. We analyzed data using the qualitative analysis software package of NVivo and thematic query building. Emergent themes centered on burden of care with emotional agony as the most prominent. Subthemes reflecting the burden of care giving included child and caregiver safety concerns, burnout, social isolation and rejection, and homicidal ideation. Caregivers also complained of physical and financial constraints associated with the care of children with nodding syndrome. The findings point to a high burden of care for caregivers of children with nodding syndrome and suggests the need to incorporate community-based psychosocial and mental health care services for the caregivers of affected children into the national health system response.

The heterogeneity in financial and time burden of caregiving to children with chronic conditions.

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Zan, Hua; Scharff, Robert L

2015-03-01

We examine the financial and time burdens associated with caring for children with chronic conditions, focusing on disparities across types of conditions. Using linked data from the 2003 to 2006 National Health Interview Survey and 2004-2008 Medical Expenditure Panel Survey, we created measures of financial burden (out-of-pocket healthcare costs, the ratio of out-of-pocket healthcare costs to family income, healthcare costs paid by insurance, and total healthcare costs) and time burden (missed school time due to illness or injury and the number of doctor visits) associated with 14 groups of children's chronic conditions. We used the two-part model to assess the effect of condition on financial burden and finite mixture/latent class model to analyze the time burden of caregiving. Controlling for the influences of other socio-demographic characteristics on caregiving burden, children with chronic conditions have higher financial and time burdens relative to caregiving burdens for healthy children. Levels of financial burden and burden sharing between families and insurance system also vary by type of condition. For example, children with pervasive developmental disorder or heart disease have a relatively low financial burden for families, while imposing a high cost on the insurance system. In contrast, vision difficulties are associated with a high financial burden for families relative to the costs borne by others. With respect to time burden, conditions such as cerebral palsy and heart disease impose a low time burden, while conditions such as pervasive developmental disorder are associated with a high time burden. This study demonstrates that differences exist in caregiving burden for children by type of chronic condition. Each condition has a unique profile of time and financial cost burden for families and the insurance system. These results have implications for policymakers and for families' savings and employment decisions.

Older Caregiving Parents: Division of Household Labor, Marital Satisfaction, and Caregiver Burden

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Essex, Elizabeth Lehr; Hong, Jinkuk

2005-01-01

Based on a sample of 126 families, this study investigated how division of household labor is related to marital satisfaction and caregiving burden among older married parents caring for adult children with intellectual disabilities. For mothers, greater spousal participation in household work and satisfaction with the division of labor were…

The impact of extended half-life versus conventional factor product on hemophilia caregiver burden.

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Schwartz, Carolyn E; Powell, Victoria E; Su, Jun; Zhang, Jie; Eldar-Lissai, Adi

2018-05-01

Extended half-life factor products have reduced annualized bleeding rates in hemophilia patients. The impact of extended half-life versus conventional factor products on hemophilia caregiver burden has not been investigated. This study aimed to evaluate caregiver burden in extended half-life versus conventional factor products for hemophilia A and B. This cross-sectional web-based study of caregivers of people with hemophilia A or B was recruited from a panel research company and by word of mouth. Participants completed the Hemophilia Caregiver Impact measure, the PedsQL Family Impact Module (PedsQL), and the Work Productivity and Activity Impairment Questionnaire (WPAI). We also collected demographic, insurance coverage, and medical information related to the hemophilia patient(s). Burden differences were assessed using linear regression and matched cohort analyses. The sample (n = 448) included 49 people who were caring for people on extended half-life factor products. Worse caregiver burden was associated with more infusions per week and more bleeds in the past 6 months. Regression analyses suggested that caring for someone who is on a extended half-life factor product is associated with lower emotional impact (β = - 0.11, p factor product had lower Emotional Impact and Practical Impact scores (t = - 2.95 and - 2.94, respectively, p factor product infusions of extended half-life factor products appears to reduce the emotional distress and practical burden of caregiving. Future work should evaluate the longitudinal impact.

Informal caregiver burden in middle-income countries Results from Memory Centers in Lima - Peru

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Nilton Custodio

Full Text Available OBJECTIVE: The aim of this study was to evaluate caregiver burden based on Zarit Burden Interview (ZBI and depression in caregivers on the Beck Depression Inventory-II (BDI-II. METHODS: Literate individuals, 18 years or older, who spoke Spanish as their native language were included. Demographic characteristics: Age, sex, education, relationship to person with dementia, length of time caregiving, other sources of help for caring, impact on the household economy, family support, and perception of impaired health; and Clinical data on care-recipients: type of dementia, time since diagnosis, treatment, and Global Deterioration Scale (GDS; the ZBI and BDI-II. Descriptive and analytical statistics were employed to assess caregiver burden and predictors of higher burden in caregivers. RESULTS: A total of 92 informal caregivers were evaluated. Regarding care-recipients, 75% were 69 years old or over, 75% had at least one year since diagnosis, 73.9% had Alzheimer's disease, 84.8% received treatment, 75% scored 5 or over on the GDS. For caregivers, 75% were 55.5 years old or over, predominantly female (81.5%, married (83.7%, the spouse of care-recipients (60.87%, had at least 10 years of education (75.0% and one year of caregiving (75%, reduced entertainment time (90.2% and self-perception of impaired health (83.7%. Median score on the ZBI was 37.5 (minimum value = 3; and maximum value = 74. The coefficient of BDI was 1.38 (p-value <0.001. CONCLUSION: This sample of Peruvian informal caregivers showed elevated ZBI values. Self-perception of worsened health, repercussion on the family economy and time caregiving were the main determinants of ZBI, although only BDI was a consistent predictor of ZBI.

Clinical and Demographic Variables Associated Coping and the Burden of Caregivers of Schizophrenia Patients.

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Mora-Castañeda, Belvy; Márquez-González, María; Fernández-Liria, Alberto; de la Espriella, Ricardo; Torres, Néstor; Arenas Borrero, Álvaro

To analyse of the relationship between burden of illness and coping strategies and the demographic variables of caregivers, and the demographic and clinical variables of people diagnosed with schizophrenia. Multicentre correlational cross-sectional study including 70 people diagnosed with schizophrenia, or a schizoaffective disorder, and 70 primary informal caregivers. They were evaluated using Zarit Caregiver Burden Inventory, Family Coping Strategies Questionnaire, Scale for the Assessment of Positive Symptoms, Scale for the Assessment of Negative Symptoms, and the brief Disability Assessment Scale. Burden of illness positively associated with patient impairment in occupational and social functioning, and negatively with education level. Avoidance, coercion and positive communication were positively associated with impairment in occupational and social functioning of patients. Social interest and friendships showed a positive association with the education level of caregivers. Spiritual assistance negatively correlated with impairment in social functioning and patient age, and resignation was negatively associated with length of the disorder and patient education level. Burden and dysfunctional coping strategies, such as avoidance and coercion, are associated with functional impairment of the patient. These findings suggest the need to provide support to caregivers, adjusted to the functional level of the patient, in order to prevent burden of care. Copyright © 2016 Asociación Colombiana de Psiquiatría. Publicado por Elsevier España. All rights reserved.

Quantifying the burden of informal caregiving for patients with cancer in Europe.

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Goren, Amir; Gilloteau, Isabelle; Lees, Michael; DaCosta Dibonaventura, Marco

2014-06-01

Informal caregivers for patients with cancer provide critical emotional and instrumental support, but this role can cause substantial burden. This study expands our understanding of cancer-related caregiving burden in Europe. Caregivers (n = 1,713) for patients with cancer and non-caregivers (n = 103,868) were identified through the 2010 and 2011 European Union National Health and Wellness Survey, administered via the Internet to adult populations in France, Germany, Italy, Spain, and the United Kingdom. Respondents completed measures of sociodemographics and health behaviors, health-related quality of life (using SF-12v2), work productivity and activity impairment (using WPAI), healthcare resource use (emergency room visits, hospitalizations, and traditional provider visits), and reported diagnosis of stress-related comorbidities (depression, anxiety, insomnia, headache, migraine, and gastrointestinal problems). Two-sided tests of means or proportions compared caregivers against non-caregivers. Multivariable regression models, comparing caregivers for patients with any cancer vs. non-caregivers on all health outcomes, adjusted for covariates (age, sex, college, income, marital status, employment, body mass index, alcohol, smoking, and Charlson comorbidity index). Caregivers for patients with cancer vs. non-caregivers reported significant (P status, 0.043-point lower health utilities, 1.46 times as much work impairment, and 1.97 times the odds of anxiety). Caregivers for patients with cancer experienced significant impairments. These findings reinforce the need for enhancing our understanding of the caregiving experience and developing supportive and personalized multicomponent interventions for caregivers, given their pivotal role in providing support for patients.

Mediating effects of burden on quality of life for caregivers of first-time stroke patients discharged from the hospital within one year.

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Tsai, Yu-Hsia; Lou, Meei-Fang; Feng, Tsui-Hsia; Chu, Tsung-Lan; Chen, Ying-Jen; Liu, Hsueh-Erh

2018-04-25

Caregiver burden may be either a predictor or an outcome of caregiver quality of life (QoL). Patient or caregiver factors that directly affect caregiver QoL, predictors that are simultaneously shared with caregiver burden and QoL, and factors that affect caregiver QoL through caregiver burden are not well understood. This study explored predictors of caregiver QoL and identified whether caregiver burden is a mediator for caregivers of first-time stroke patients. This is a cross-sectional study. We recruited first-time stroke patients who had been discharged from the hospital within 1 year. We screened caregivers with two major inclusion criteria: age > 20 years old and being the family member who provides the most patient-care hours out of all family caregivers. Caregiver burden (Caregiver Strain Index, CSI), QoL (Caregiver Quality of Life Index, CQLI), and patient and caregiver characteristics were assessed with structured questionnaires. Multiple-regression and bootstrap analysis were conducted for data analysis. A total of 126 caregivers completed the questionnaires. Higher caregiver burdens, lower caregiver education level, lower self-rated health, lower monthly family income, and spouses who were responsible for medical fees were significant predictors of lower caregiver QoL. Poor self-rated health and monthly family income of $ 666 USD or below were the strongest predictors of caregiver QoL. Spouses who were responsible for medical fees and lower monthly family income had direct negative effects on caregiver QoL, but these factors exhibited no indirect mediating effect between caregiver characteristics and QoL through caregiver burden as a mediator. Caregiver education level at or below elementary school and poor or fair self-rated-health had direct negative effects on caregiver QoL, which were mediated by caregiver burden. Our study indicated predictors of caregiver QoL and the relationships with caregiver burden among first-time stroke survivors in the

Caregiving in first-episode psychosis: social characteristics associated with perceived 'burden' and associations with compulsory treatment.

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Boydell, Jane; Onwumere, Juliana; Dutta, Rina; Bhavsar, Vishal; Hill, Nathan; Morgan, Craig; Dazzan, Paola; Morgan, Kevin; Pararajan, Madonna; Kuipers, Elizabeth; Jones, Peter; Murray, Robin; Fearon, Paul

2014-05-01

High incidence of psychosis and compulsory treatment within black and minority ethnic (BME) groups in the UK remain a concern. Psychosis has an impact on families and family involvement is important in predicting compulsory treatment. We therefore aimed to report the levels and predictors of caregiver burden in first-episode psychosis, in white British, and BME groups of carers, and investigate their relevance to compulsory treatment. A total of 124 caregivers were interviewed soon after the onset of psychosis using the General Health Questionnaire, GHQ-28, the Experience of Caregiving Inventory, the Personal and Psychiatric History Schedule, and the MRC Sociodemographic Schedule. The overall level of distress as measured by GHQ-28 was high (mean 50, SD 11.4). Feelings of carer burden were also high (mean total negative score 72.5, SD 34.8), increased in men, and with carer age. Neither ethnicity nor social class nor social support was associated with distress or burden. Compulsory treatment was predicted by carer burden (as indicated by carer reports of 'problems with services' (OR 1.08; 95% CI 1.01, 1.15; P = 0.023)); this was particularly evident in the black Caribbean group of carers (OR 1.28; 95% CI 1.04, 1.57; P = 0.02) CONCLUSION: Carers of adults with first-episode psychosis experience considerable psychological distress and feelings of burden. There was a specific association between carer burden, specifically in terms of experience of services, and compulsory admission of service users, particularly in the black Caribbean group. Better ways of liaising with carers and targeted efforts to reduce carer burden at illness onset are needed. © 2013 Wiley Publishing Asia Pty Ltd.

Caregiver burden and perceived health competence when caring for family members diagnosed with Alzheimer's disease and related dementia.

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Bailes, Christine O; Kelley, Colleen M; Parker, Nadine M

2016-10-01

To identify if there is a relationship between perceived health competence and burden of care of informal caregivers of family members with Alzheimer's disease and related dementia (ADRD). Informal caregivers 18 years and older who received services from the Alzheimer's Resource of Alaska were invited to complete a survey. Findings indicate that there was a negative correlation between perceived health competence and burden of care (N = 64, r = -.54, p Scale: objective burden (r = -.65, p = competence, nurse practitioners (NPs) can play an important role in assessing caregiver burden. The results of this study enlighten NPs about informal caregiver burden and will help guide discussions and assessments during routine healthcare visits with the goal of achieving optimal health for informal caregivers. ©2016 American Association of Nurse Practitioners.

Adult informal caregivers reporting financial burden in Hawaii, Kansas, and Washington: Results from the 2007 Behavioral Risk Factor Surveillance System.

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Kusano, Claudia T; Bouldin, Erin D; Anderson, Lynda A; McGuire, Lisa C; Salvail, Florentina R; Simmons, Katrina Wynkoop; Andresen, Elena M

2011-10-01

Given the unpaid nature of the work, informal caregiving can create a financial burden for caregivers. Little has been done to identify specific predictors of experiencing financial burden. This study investigated demographic and health factors comparing caregivers who reported having or not having financial burden. Data are derived from adult caregivers (N = 3,317) as part of the 2007 Behavioral Risk Factor Surveillance System in Hawaii, Kansas, and Washington. The adjusted odds ratios for reporting a financial burden were estimated for demographic and other risk factors. Caregivers who reported a financial burden were younger, had lower incomes, were more likely to be current smokers, have had a stroke, and rate their health as fair or poor compared to caregivers who did not report a financial burden. Caregivers who were younger (ages 18-34), resided with care recipients, spent 20-39 hours per week providing care, and reported having a disability were at a statistically significantly higher odds of reporting a financial burden. Given the current economic difficulties faced by many Americans, further insights into the perceived financial burdens experienced by informal caregivers as well as linkages to policy and programs designed to support caregivers are critical for public health professionals to address the expanding needs in states and communities. Published by Elsevier Inc.

A comparative study of care burden and social support among caregivers of persons with schizophrenia and epilepsy

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Nilufer Karim

2015-07-01

Full Text Available Background: The caregivers of persons with epilepsy and schizophrenia undergo severe emotional, physical, financial burden due to the nature, chronicity, disability, and stigma attached to the illness. Aim: To assess the burden and social support among caregivers of persons with schizophrenia and epilepsy. Method: The study was conducted at the Out Patient Department of LokopriyaGopinathBordoloi Regional Institute of Mental Health, Tezpur. It was a comparative study. Purposive sampling technique was used for selection of the sample. The sample for the current study comprised of caregivers of 30 persons with schizophrenia and 30 persons suffering from epilepsy. A semi-structured socio-demographic data sheet, the Burden Assessment Schedule (BAS, the Social Support Questionnaire, and the General Health Questionnaire were administered to the caregivers. Results: There was no significant difference reported by the caregivers in the two groups with the entire domains of BAS and perceived social support. Physical and mental health, and caregivers’ strategy domains of BAS had significant negative correlation at 0.05 levels with perceived social support. External support, support of patient, taking responsibility, and other relation domains of BAS had significant negative correlation at the 0.01 level with perceived social support. Conclusion: While the two groups had no significant difference with the entire domains of BAS and perceived social support; physical and mental health, and caregivers’ strategy had significant negative correlation with perceived social support.

Instruments for assessing the burden of informal caregiving for stroke patients in clinical practice: a comparison of CSI, CRA, SCQ and self-rated burden

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van Exel, N. Job A.; Scholte op Reimer, Wilma J. M.; Brouwer, Werner B. F.; van den Berg, Bernard; Koopmanschap, Marc A.; van den Bos, Geertrudis A. M.

2004-01-01

Objective: To compare the feasibility, convergent and clinical validity of three commonly used burden scales: Caregiver Strain Index (CSI), Caregiver Reaction Assessment (CRA) and Sense of Competence Questionnaire (SCQ), with a self-developed single question on self-rated burden (SRB). Subjects:

The impact of cardiac arrest on the long-term wellbeing and caregiver burden of family caregivers: a prospective cohort study.

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van Wijnen, Helena Gfm; Rasquin, Sascha Mc; van Heugten, Caroline M; Verbunt, Jeanine A; Moulaert, Véronique Rm

2017-09-01

The purpose was to gain insight in the functioning of caregivers of cardiac arrest survivors at 12 months after a cardiac arrest. Secondly, the course of the wellbeing of the caregivers during the first year was studied. Finally, factors that are associated with a higher care burden at 12 months after the cardiac arrest were investigated. A total of 195 family caregivers of cardiac arrest survivors were included. Quality of life (SF-36, EuroQol-VAS), caregiver strain (CSI) and emotional functioning (HADS, IES) were measured at two weeks, three months and one year after the cardiac arrest. Thereby, the caregiver was asked to fill out the cognitive failure questionnaire (CFQ) to evaluate their view on the cognitive status of the patient. Caregiver strain was high in 16 (15%) of the caregivers at 12 months. Anxiety was present in 33 (25%) caregivers and depression in 18 (14%) caregivers at 12 months. The repeated measures MANOVA showed that during the first year the following variables improved significantly: SF-36 domains social and mental health, role physical, role emotional and vitality, caregiver strain, HADS and IES ( Pcaregiver strain correlated significantly (explained variance 63%, P=0.03) with caregiver HADS ( P=0.01), EuroQol-VAS ( P=0.02), and the CFQ ( Pcaregivers improves during the first year up to normal levels, but caregivers with emotional problems or perceived cognitive problems at 12 months are at risk for developing a higher care burden.

Caregiver burden from caring for impaired elderly: a cross-sectional study in rural Lower Egypt

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Salama, Rasha

2012-01-01

Background: increased life expectancy and an aging population have made home care for the elderly a major responsibility for families. Caring for a chronically ill or physically disabled person has been referred to as physically or emotionally stressful, placing the caregiver at a heightened risk of burden. This study aimed to identify factors related to caregiving burden among caregivers who care for their disabled older family members. Methods: a cross sectional descriptive study was conduc...

Effects of frequent hemodialysis on perceived caregiver burden in the Frequent Hemodialysis Network trials.

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Suri, Rita S; Larive, Brett; Hall, Yoshio; Kimmel, Paul L; Kliger, Alan S; Levin, Nathan; Tamura, Manjula Kurella; Chertow, Glenn M

2014-05-01

Patients receiving hemodialysis often perceive their caregivers are overburdened. We hypothesize that increasing hemodialysis frequency would result in higher patient perceptions of burden on their unpaid caregivers. In two separate trials, 245 patients were randomized to receive in-center daily hemodialysis (6 days/week) or conventional hemodialysis (3 days/week) while 87 patients were randomized to receive home nocturnal hemodialysis (6 nights/week) or home conventional hemodialysis for 12 months. Changes in overall mean scores over time in the 10-question Cousineau perceived burden scale were compared. In total, 173 of 245 (70%) and 80 of 87 (92%) randomized patients in the Daily and Nocturnal Trials, respectively, reported having an unpaid caregiver at baseline or during follow-up. Relative to in-center conventional dialysis, the 12-month change in mean perceived burden score with in-center daily hemodialysis was -2.1 (95% confidence interval, -9.4 to +5.3; P=0.58). Relative to home conventional dialysis, the 12-month change in mean perceived burden score with home nocturnal dialysis was +6.1 (95% confidence interval, -0.8 to +13.1; P=0.08). After multiple imputation for missing data in the Nocturnal Trial, the relative difference between home nocturnal and home conventional hemodialysis was +9.4 (95% confidence interval, +0.55 to +18.3; P=0.04). In the Nocturnal Trial, changes in perceived burden were inversely correlated with adherence to dialysis treatments (Pearson r=-0.35; P=0.02). Relative to conventional hemodialysis, in-center daily hemodialysis did not result in higher perceptions of caregiver burden. There was a trend to higher perceived caregiver burden among patients randomized to home nocturnal hemodialysis. These findings may have implications for the adoption of and adherence to frequent nocturnal hemodialysis.

The effectiveness of a group psycho-educational program on family caregiver burden of patients with mental disorders

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Navidian Ali

2012-08-01

Full Text Available Abstract Background Brief family intervention may have a positive impact on family caregivers for patients with mental disorders. We assessed the effectiveness of a group psycho-educational program on family caregivers for patients with schizophrenia and mood disorders. Methods This randomized controlled trial was performed on 100 caregivers for patients with mental disorders attending the Isfahan Behavioral Sciences Research Center (IBSRC, in Isfahan, Iran. One hundred family caregivers of patients with schizophrenia (n = 50 and mood disorders (n = 50 were selected and assigned randomly to either a psycho-educational group intervention or routine care in each diagnosis category. The caregivers were followed for 3 months. Caregiver burden was assessed using the Zarit Burden Interview Results The mean scores of the Zarit caregiver burden decreased significantly for the group that participated in the psycho-educational program, while scores in the control group did not change significantly. Conclusions This group intervention program was effective to reduce the caregiver burden for both categories of mental disorders in the Iranian population. This group intervention program may improve the quality of life of patients and caregivers by improving the standards of care giving. Trial registration RCT registration number: IRCT138804272200N

Informal caregiver burden in middle-income countries: Results from Memory Centers in Lima – Peru

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Custodio, Nilton; Lira, David; Herrera-Perez, Eder; del Prado, Liza Nuñez; Parodi, José; Guevara-Silva, Erik; Castro-Suarez, Sheila; Mar, Marcela; Montesinos, Rosa; Cortijo, Patricia

2014-01-01

Objective The aim of this study was to evaluate caregiver burden based on Zarit Burden Interview (ZBI) and depression in caregivers on the Beck Depression Inventory-II (BDI-II). Methods Literate individuals, 18 years or older, who spoke Spanish as their native language were included. Demographic characteristics: Age, sex, education, relationship to person with dementia, length of time caregiving, other sources of help for caring, impact on the household economy, family support, and perception of impaired health; and Clinical data on care-recipients: type of dementia, time since diagnosis, treatment, and Global Deterioration Scale (GDS); the ZBI and BDI-II. Descriptive and analytical statistics were employed to assess caregiver burden and predictors of higher burden in caregivers. Results A total of 92 informal caregivers were evaluated. Regarding care-recipients, 75% were 69 years old or over, 75% had at least one year since diagnosis, 73.9% had Alzheimer's disease, 84.8% received treatment, 75% scored 5 or over on the GDS. For caregivers, 75% were 55.5 years old or over, predominantly female (81.5%), married (83.7%), the spouse of care-recipients (60.87%), had at least 10 years of education (75.0%) and one year of caregiving (75%), reduced entertainment time (90.2%) and self-perception of impaired health (83.7%). Median score on the ZBI was 37.5 (minimum value = 3; and maximum value = 74). The coefficient of BDI was 1.38 (p-value <0.001). Conclusion This sample of Peruvian informal caregivers showed elevated ZBI values. Self-perception of worsened health, repercussion on the family economy and time caregiving were the main determinants of ZBI, although only BDI was a consistent predictor of ZBI. PMID:29213929

The caregiver burden in lupus: findings from UNVEIL, a national online lupus survey in the United States.

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Al Sawah, S; Daly, R P; Foster, S A; Naegeli, A N; Benjamin, K; Doll, H; Bond, G; Moshkovich, O; Alarcón, G S

2017-01-01

Lupus imposes a substantial burden on patients; however, little is known about its impact on those caring for patients with the disease. In this study, we examined the impact 'caring for patients with lupus' has on caregivers from their own perspective. UNVEIL was a one-time online national cross-sectional survey developed in partnership with the Lupus Foundation of America and fielded targeting the US Lupus Foundation of America constituents in 2014. Eligible caregivers were adults who self-identified as unpaid caregivers of patients with lupus. Eligible caregivers had to complete a series of sociodemographic questions as well as a series of well established outcome measures, such as the Short Form 12v2 Health Survey, the Work Productivity and Activity Index, the Caregiver Burden Inventory, and the Perceived Benefits of Caregiving Scale. A total of 253 caregivers completed the survey. The majority of caregivers (90.1%) were aged 60 years or younger, more than half (54.2%) were men, and more than half (59.7%) identified themselves as either a spouse or a partner to the patient with lupus they were caring for. Overall health-related quality of life was close to the norm mean of the general US population. Caregivers who were employed missed an average of 12.8% of paid work time due to caregiving responsibilities and reported a 33.5% reduction in on-the-job effectiveness. Nearly half of the caregivers surveyed (49.4%) indicated that their caregiving responsibilities impacted their ability to socialize with friends, and almost all caregivers (97.6%) reported experiencing increased anxiety and stress in relation to their caregiving role. Caregiving for patients with lupus has a substantial impact on the work productivity and the social and emotional functioning of caregivers. Healthcare professionals and policymakers should continually assess the impact of healthcare decisions on the well-being of those caring for patients with lupus. © The Author(s) 2016.

Level of understanding of Alzheimer disease among caregivers and the general population.

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Jorge, C; Cetó, M; Arias, A; Blasco, E; Gil, M P; López, R; Dakterzada, F; Purroy, F; Piñol-Ripoll, G

2018-05-11

Understanding of Alzheimer disease is fundamental for early diagnosis and to reduce caregiver burden. The objective of this study is to evaluate the degree of understanding of Alzheimer disease among informal caregivers and different segments of the general population through the Alzheimer's Disease Knowledge Scale. We assessed the knowledge of caregivers in different follow-up periods (less than one year, between 1 and 5 years, and over 5 years since diagnosis) and individuals from the general population. Alzheimer's Disease Knowledge Scale scores were grouped into different items: life impact, risk factors, symptoms, diagnosis, treatment, disease progression, and caregiving. A total of 419 people (215 caregivers and 204 individuals from the general population) were included in the study. No significant differences were found between groups for overall Alzheimer's Disease Knowledge Scale score (19.1 vs. 18.8, P = .9). There is a scarce knowledge of disease risk factors (49.3%) or the care needed (51.2%), while symptoms (78.6%) and course of the disease (77.2%) were the best understood aspects. Older caregiver age was correlated with worse Alzheimer's Disease Knowledge Scale scores overall and for life impact, symptoms, treatment, and disease progression (P < .05). Time since diagnosis improved caregivers' knowledge of Alzheimer disease symptoms (P = .00) and diagnosis (P = .05). Assessing the degree of understanding of Alzheimer disease is essential to the development of health education strategies both in the general population and among caregivers. Copyright © 2018 Sociedad Española de Neurología. Publicado por Elsevier España, S.L.U. All rights reserved.

Burden of care in the caregivers of patients with anxiety disorders

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Manu Agarwal

2017-01-01

Full Text Available Introduction: Anxiety disorders are one of the frequently encountered psychiatric disorders in psychiatric clinics which have significant impact on the psychosocial well-being of the patient as well as their caregivers. Study Design and Aims: This study is a non- invasive, cross sectional study of 91 patients with anxiety disorder (except obsessive compulsive disorder aimed to assess the burden of care on their key-relatives and to study various socio demographic and clinical variables of the patient in relation to burden of care on key-relatives. Methodology: Patients diagnosed with anxiety disorders other than obsessive compulsive disorder and their key relatives satisfying the selection criteria were enrolled in the study. Assessment was done on semi-structured proforma, ICD 10 DCR, SCAN (Schedules for Clinical Assessment in Neuropsychiatry, International Personality Disorder Examination (IPDE, Burden assessment schedule, Hamilton Anxiety Rating Scale (HAM-A. Result: Total adjusted burden score in our study was 40.41 which is suggestive of mild burden. It was found that the burden of care was higher in male gender, married individuals, in joint families, among spouses, urban background, in the age group 41 to 50 years, low income group particularly on farmers and laborers. Generalized anxiety disorder was associated with more burden of care in comparison to other anxiety disorders. Conclusion: Key relatives of patients with anxiety disorder have significant burden of care in different domains along the socio-demographic strata.

The economic burden of caregiving on families of children and adolescents with cancer: a population-based assessment.

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Pagano, Eva; Baldi, Ileana; Mosso, Maria Luisa; di Montezemolo, Luca Cordero; Fagioli, Franca; Pastore, Guido; Merletti, Franco

2014-06-01

Childhood cancer represents a relevant economic burden on families. The preferred tool to investigate family expenditure is the retrospective questionnaire, which is subject to recall errors and selection bias. Therefore, in the present study the economic burden of caregiving on families of children and adolescents (0-19 years of age) with cancer was analysed using administrative data as an alternative to retrospective questionnaires. Incident cases of cancer diagnosed in children and adolescents in 2000-2005 (N = 917) were identified from the Piedmont Childhood Cancer Registry and linked to available administrative databases to identify episodes of care during the 3 years after diagnosis (N = 13,433). The opportunity cost of informal caregiving was estimated as the value of the time spent by one of the parents, and was assumed to be equal to the number of days during which the child received inpatient care, day-care or outpatient radiotherapy. Factors affecting the level of economic burden of caregiving on families were analysed in a multivariable model. The economic burden of caregiving increased when care was supplied at the Regional Referral Centre, or when treatment complexity was high. Families with younger children had a higher level of economic burden of caregiving. Leukaemia required a higher family commitment than any other cancer considered. Estimates of the economic burden of caregiving on families of children and adolescents with cancer derived from administrative data should be considered a minimum burden. The estimated effect of the covariates is informative for healthcare decision-makers in planning support programmes. © 2013 Wiley Periodicals, Inc.

The relationship between burden and well-being among caregivers of Italian people diagnosed with severe neuromotor and cognitive disorders.

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Fianco, Andrea; Sartori, Raffaela D G; Negri, Luca; Lorini, Saverio; Valle, Giovanni; Delle Fave, Antonella

2015-04-01

In studies on caregiving, high levels of perceived burden are commonly considered as synonymous with poor well-being. This study aimed at better disentangling the relationship between burden and well-being dimensions through their joint investigation. To this purpose, perceived well-being and social resources were evaluated among caregivers reporting different levels of burden. Participants were 91 caregivers (mean age=50.4; SD=9.6), parents of people diagnosed with severe neuromotor and cognitive disorders. Participants completed a semi-structured interview and a set of scaled questionnaires: Caregiver Burden Inventory (CBI), Satisfaction with Life Scale, Positive and Negative Affect Schedule, Depression Anxiety Stress Scale, Eudaimonic and Hedonic Happiness Investigation, Resilience Scale for Adults, and Multidimensional Scale of Perceived Social Support. Participants were divided into two groups according to their perceived burden level, assessed through CBI. In both groups, the subjective components of burden accounted for the major fraction of the total burden level. Participants perceiving high burden reported higher levels of depression related emotions, lower life satisfaction and lower resilience than participants perceiving low burden. No group difference emerged in perceived meaningfulness and social support. A regression analysis showed that the best predictor of perceived burden was life satisfaction, followed to a lesser extent by resilience, while depression related emotions did not provide significant contribution. Findings suggest that the joint assessment of burden and well-being dimensions, that are co-existing in caregivers' experience, allow for the identification of personal and relational resources that can be usefully included in interventions addressed to caregivers. Copyright © 2015 Elsevier Ltd. All rights reserved.

Canada's Compassionate Care Benefit: is it an adequate public health response to addressing the issue of caregiver burden in end-of-life care?

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Williams, Allison M; Eby, Jeanette A; Crooks, Valorie A; Stajduhar, Kelli; Giesbrecht, Melissa; Vuksan, Mirjana; Cohen, S Robin; Brazil, Kevin; Allan, Diane

2011-05-18

An increasingly significant public health issue in Canada, and elsewhere throughout the developed world, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economic consequences. In this article, we specifically examine how Canada's Compassionate Care Benefit (CCB)--a contributory benefits social program aimed at informal P/EOL caregivers--operates as a public health response in sustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects of caregiver burden that are addressed within the population health promotion (PHP) model. As part of a national evaluation of Canada's Compassionate Care Benefit, 57 telephone interviews were conducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths and weaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software and emerging themes were identified by the research team, with such findings published elsewhere. The purpose of the present analysis was identified after comparing the findings to the literature specific to caregiver burden and public health, after which data was analyzed using the PHP model as a guiding framework. Informal caregivers spoke to several of the determinants of health outlined in the PHP model that are implicated in their burden experience: gender, income and social status, working conditions, health and social services, social support network, and personal health practises and coping strategies. They recognized the need for improving the CCB to better address these determinants. This study, from the perspective of family caregivers, demonstrates that the CCB is not living up to its full potential in sustaining informal P/EOL caregivers. Effort is required to transform the CCB so that it may fulfill the

[Quality of life of caregivers for patients of cerebrovascular accidents: association of (socio-demographic) characteristics and burden].

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Costa, Tatiana Ferreira da; Costa, Kátia Nêyla de Freitas Macêdo; Fernandes, Maria das Graças Melo; Martins, Kaisy Pereira; Brito, Silmery da Silva

2015-04-01

Investigating the association between quality of life with socio-demographic characteristics and the burden of caregivers for individuals with cerebrovascular accident sequelae. A descriptive, cross-sectional study with a sample composed of 136 caregivers. For data collection, a semi-structured questionnaire, the Barthel, Burden Interview and Short-Form-36 scales were used. Correlation analysis, t-Student test and F-test were used for the analysis in order to compare averages. Significant averages in quality of life were demonstrated in association with female caregivers and those over 60 years in the field 'functional capacity,' and in the domains of 'mental health' and 'vitality' for those with higher income. Regarding burden association, the highlighted areas were 'functional capacity,' 'physical aspects,' 'emotional aspects' and 'pain.' The creation of public policies and social support to effectively reduce the burden on caregivers is a necessity.

Coping with celiac disease: how heavy is the burden for caregivers?

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Francesca Ferretti

Full Text Available Background: Celiac disease (CD is the most common chronic enteropathy demanding a lifelong gluten-free diet. Objective: The aim of the study was to identify and estimate the subjective burden of caregivers of celiac patients. Methods: A cross-sectional observational study was conducted during the regional meeting of the Italian Society for the Celiac Disease in April 2014. A written self-administered anonymous questionnaire enquired into caregivers' demographic profile, natural history of patients' disease and caregivers' self-reported degree of burden at the onset of symptoms (T0, at CD diagnosis (T1 and during follow-up (T2. Fifty-five caregivers completed the questionnaire (69% females, 47 ± 13 years old, 73% first-degree relatives. Results: The presence of warning symptoms, such as abdominal pain, chronic diarrhea and weight loss was responsible for higher levels of concern. A statistically significant reduction of concern in the follow-up was demonstrated by the comparison of visual analogue scales (VAS values from T0 to T2 and from T1 to T2 (6.8 ± 3.1 vs 4.2 ± 2.9 and 7.0 ± 2.5 vs 4.2 ± 2.9, respectively; p < 0.001, mirroring the reduction of distress among newly diagnosed individuals. A global impact of gluten-free diet and CD on quality of life was reported in VASs (6.7 ± 2.4. Family (5.4 ± 3.1, social (5.6 ± 2.9 and economic (4.5 ± 3.4 domains were the most associated. Conclusion: The assessment of caregivers' subjective burden should be considered as an essential step in the evaluation of celiac patients, needing a specific investigation and support.

Is functional dependence of Duchenne muscular dystrophy patients determinant of the quality of life and burden of their caregivers?

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Maria Clara Drummond Soares de Moura

2015-01-01

Full Text Available Objective The relationship between functional dependence and quality of life (QOL in Duchenne muscular dystrophy (DMD patients and burden and QOL in caregivers is not clear. This study investigated possible relationships between functional dependence/QOL of DMD patients and QOL/burden of caregivers. Method This study included 35 boys (6-17 years and respective caregivers (above 21 years. Caregivers answered to World Health Organization Quality of Life and Zarit Burden Interview questionnaires. Patients were assessed with the Motor Function Measure and the Autoquestionnaire Qualité de vie Enfant Imagé. Spearman correlations and linear regressions were run to investigate relationships between the variables. Results The occurrence of lower QOL and higher burden among the caregivers of patients with Duchenne muscular dystrophy was evidenced. The functional dependence of patients was not considered a determinant factor. Higher caregivers’ burden was related to lower caregivers’ QOL and to higher patients’ ages.

Zarit Burden Interview Psychometric Indicators Applied in Older People Caregivers of Other Elderly 1

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Bianchi, Mariana; Flesch, Leticia Decimo; Alves, Erika Valeska da Costa; Batistoni, Samila Sathler Taveres; Neri, Anita Liberalesso

2016-01-01

ABSTRACT Objective: to derive psychometric indicators of construct validity and internal consistence of the Zarit Burden Interview scale for caregivers, describing associations of the scale with metrics related to care demands, coping strategies and depression in aged caregivers. Method: crosscutting descriptive and correlational study. The convenience sample was composed by a hundred and twenty one senior caregivers (Avg=70.5 ± 7.2 years, 73% women). They answered a questionnaire to check the physical and cognitive demands of care, the Zarit Burden Interview (ZBI), the California Inventory of Coping Strategies and the Geriatric Depression Scale (GDS-15). Results: ZBI showed good internal consistency and also for the three factors emerging from factor analysis, explaining 44% of variability. ZBI is positively related with objective care demands (p < 0.001), depression (p = 0.006) and use of dysfunctional coping strategies (p = 0.0007). Conclusion: ZBI is of interest to be applied to aged caregivers and the association of higher degrees of burden, dysfunctional coping and depression show a vulnerability scenario that may affect to older people taking care of other elderly. PMID:27901220

Family Caregiver Uplift and Burden: Associations with Aggressive Behavior in Adults with Intellectual Disability

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Unwin, Gemma; Deb, Shoumitro

2011-01-01

The purpose of this study was to investigate the experience of family caregivers caring for adults with intellectual disabilities (ID) who display aggressive behavior in terms of associations with caregiver burden and uplift. The family caregivers of 44 people with ID and aggressive behavior were interviewed using a suite of questionnaires and…

Family caregiving for older adults : gendered roles and caregiver burden in emigrant households of Kerala, India

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Ugargol, Allen Prabhaker; Bailey, Ajay

2018-01-01

The Indian state of Kerala leads the demographic transition and characteristically showcases emigration of predominantly male adult children, leaving behind parents, spouses and children. When men emigrate, gendered contexts burden women, especially spouses and daughters-in-law, with caregiving

Mindfulness as a Protective Factor for the Burden of Caregivers of Amyotrophic Lateral Sclerosis Patients.

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Pagnini, Francesco; Phillips, Deborah; Bosma, Colin M; Reece, Andrew; Langer, Ellen

2016-01-01

Caregivers of people with severe chronic conditions, such as amyotrophic lateral sclerosis (ALS), are at risk of developing depression and anxiety and reduced quality of life. Few studies have explored protective factors in this population and none investigated the role of mindfulness. The study aimed to examine the relationship between mindfulness and health-related outcomes in a population of ALS caregivers. We conducted an online survey with ALS caregivers, and again at 4-month follow-up, to assess mindfulness, burden, quality of life, anxiety, and depression. The associations between mindfulness and the other outcomes were evaluated both cross-sectionally and longitudinally. Mindfulness correlated negatively with burden, depression, and anxiety and positively with quality of life, maintaining stability through time. Our results showed that mindfulness is positively related to quality of life and negatively related to level of burden. We suggest that this construct can represent a preventative factor toward the negative effects of caregiving. © 2015 Wiley Periodicals, Inc.

The ties that bind: the relationship between caregiver burden and the neuropsychological functioning of TBI survivors.

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Lehan, Tara; Arango-Lasprilla, Juan Carlos; de los Reyes, Carlos José; Quijano, María Cristina

2012-01-01

Advances in medical and assistive technology have increased the likelihood of survival following a traumatic brain injury (TBI). Consequently, families frequently must provide care to individuals with TBI. Because they are rarely prepared for the associated demanding medical needs and financial burden, family caregivers are at risk for physical and emotional problems, which can negatively influence their individual and family functioning. Whereas scholars have examined the influence of survivor functioning on caregiver burden, few have explicitly recognized that caregiver burden also influences survivor functioning. Results of a multivariate linear regression suggest that, in a sample of 51 pairs of TBI survivors and their caregivers living in Colombia, survivors receiving care from a family member who reported a higher level of burden had poorer objective neuropsychological functioning than those receiving care from a family member who reported a lower level of burden, after controlling for survivor education and history of occupational therapy. Therefore, a family-focused approach might maximize intervention effectiveness, especially for Latin American and Hispanic families, which tend to be characterized by a strong sense of familism. The emphasis on family can create problems in a healthcare system that views the individual as the primary unit.

Quality of life of caregivers for patients of cerebrovascular accidents: association of (socio-demographic characteristics and burden

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Tatiana Ferreira da Costa

2015-04-01

Full Text Available OBJECTIVE Investigating the association between quality of life with socio-demographic characteristics and the burden of caregivers for individuals with cerebrovascular accident sequelae. METHOD A descriptive, cross-sectional study with a sample composed of 136 caregivers. For data collection, a semi-structured questionnaire, the Barthel, Burden Interview and Short-Form-36 scales were used. Correlation analysis, t-Student test and F-test were used for the analysis in order to compare averages. RESULTS Significant averages in quality of life were demonstrated in association with female caregivers and those over 60 years in the field 'functional capacity,' and in the domains of 'mental health' and 'vitality' for those with higher income. Regarding burden association, the highlighted areas were 'functional capacity,' 'physical aspects,' 'emotional aspects' and 'pain.' CONCLUSION The creation of public policies and social support to effectively reduce the burden on caregivers is a necessity.

Caregiver Burden for Patients with Dementia with or Without Hiring Foreign Health Aides: A Cross-Sectional Study in a Northern Taiwan Memory Clinic

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Nian-Sheng Tzeng

2015-01-01

Full Text Available Background: The aim of the present study was to determine the prevalence, profile, and severity of dementia and the relative impact of these factors on caregiver burden in a selected population of persons with dementia and their caregivers. Methods: A convenience sample of 100 outpatients and their family caregivers dyads who presented to a memory clinic in one medical center during one consecutive year were recruited. The diagnosis and severity of dementia were determined according to the Diagnostic and Statistical Manual of Mental Disorders, Version IV, Text Revision. The clinical dementia rating scale, mini-mental status examination, and Clinical Global Impression of severity were also administered. The caregiver strain index was used to assess caregiver burden. Results: Caregiver burden is related to the severity of dementia, impairment of cognitive function, and severity of neuropsychiatric symptoms. The caregivers who were younger, nonspousal family members, had a poor relationship with the dementia patient, and psychosomatic symptoms after caring for the patient, or provided longer hours of care-giving, experienced greater strains. Hiring foreign helpers was not associated with a lower caregiver burden. Conclusions: Greater caregiver burden is associated with several factors related to persons with dementia and their caregivers. A possible over-burden on caregivers should be of concern in Taiwan. Hiring foreign helpers was not associated with a lower caregiver burden.

The humanistic and economic burden of Dravet syndrome on caregivers and families: Implications for future research.

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Jensen, Mark P; Brunklaus, Andreas; Dorris, Liam; Zuberi, Sameer M; Knupp, Kelly G; Galer, Bradley S; Gammaitoni, Arnold R

2017-05-01

We reviewed the current literature with respect to the humanistic and financial burdens of Dravet Syndrome (DS) on the caregivers of children with DS, in order to (1) identify key unanswered questions or gaps in knowledge that need to be addressed and then, based on these knowledge gaps, (2) propose a research agenda for the scientific community to address in the coming decade. The findings support the conclusion that caring for a child with DS is associated with significant humanistic burden and direct costs. However, due in part to the paucity of studies, as well as the lack of measures of specific burden domains, there remains much that is not known regarding the burden of caregiving for children with DS. To address the significant knowledge gaps in this area, research is needed that will: (1) identify the specific domains of caregivers' lives that are impacted by caring for a child with DS; (2) identify or, if needed, develop measures of caregiving impact in this area; (3) identify the factors that influence DS caregiving burden; (4) develop and evaluate the efficacy of treatments for reducing the negative impact of DS and its comorbidities on DS caregivers; (5) quantify the direct medical costs associated with DS and DS comorbidities and identify the factors that influence these costs; and (6) quantify and fully explore the indirect costs of DS. Research that addresses these goals will provide the empirical foundation needed for improving the quality of life of children with DS and their families. Copyright © 2017 Elsevier Inc. All rights reserved.

Physical activity attenuates neuropsychiatric disturbances and caregiver burden in patients with dementia

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Gustavo Christofoletti

2011-01-01

Full Text Available INTRODUCTION: A significant benefit from physical activity has recently been described in some patients who suffer from neurodegenerative diseases. OBJECTIVE: To assess the effects of physical activity on neuropsychiatric disturbances in demented patients and on the mental burden of their caregivers. METHODS: Assisted by a public geriatric psychiatry clinical unit, we studied 59 patients with dementia. Patients were divided into three groups according to their diagnosis and level of physical activity. Data were assessed through a semi-structured interview. Patients were evaluated with the Neuropsychiatric Inventory, the Mini-Sleep Questionnaire and the Baecke Questionnaire. The data were statistically analyzed using the Mann-Whitney U test and linear regression, with the level of significance set at 5%. RESULTS: Patients with Alzheimer's or vascular dementia who engaged in physical activity had fewer neuropsychiatric symptoms than those who did not. When compared to the control group, the caregivers of patients with vascular dementia who engaged in physical activity had a reduced burden. CONCLUSION: The regular practice of physical activity seems to contribute to a reduction in neuropsychiatric symptoms in dementia patients and to attenuate the burden of the caregivers of those patients.

Burden and Cognitive Appraisal of Stroke Survivors' Informal Caregivers: An Assessment of Depression Model With Mediating and Moderating Effects.

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Tsai, Yi-Chen; Pai, Hsiang-Chu

2016-04-01

This study proposes and evaluates a model of depression that concerns the role of burden and cognitive appraisal as mediators or moderators of outcomes among stroke survivor caregivers. A total of 105 informal caregivers of stroke survivor completed the self-report measures of Caregiver Burden Inventory, Center for Epidemiologic Studies Depression Scale, and Cognitive Impact of Appraisal Scale. The Glasgow Coma Scale and Barthel Index were used by the researcher to examine the physical functional status of the survivor. Partial least squares (PLS) path modeling was used to estimate the parameters of a depression model that included mediating or moderating effects. The model shows that burden and impact of cognitive appraisal have a significant direct and indirect impact on depression, while survivor physical functional status does not have a direct impact. The model also demonstrates that burden and impact of cognitive appraisal separately play a mediating role between survivor physical functional status and caregiver depression. In addition, cognitive appraisal has a moderating influence on the relationship between burden and depression. Overall, survivor physical functional status, burden, and cognitive appraisal were the predictors of caregiver depression, explaining 47.1% of the variance. This study has shown that burden and cognitive appraisal are mediators that more fully explain the relationship between patient severity and caregiver depression. Copyright © 2015 Elsevier Inc. All rights reserved.

The relationship of specific items on the Neuropsychiatric Inventory to caregiver burden in dementia: a systematic review.

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Terum, Toril Marie; Andersen, John Roger; Rongve, Arvid; Aarsland, Dag; Svendsboe, Ellen J; Testad, Ingelin

2017-07-01

Neuropsychiatric symptoms (NPSs) are common in dementia, and they have been identified as important care-recipient variables in terms of their impact on caregiver burden. The aim of this review was to describe how individual NPSs in dementia, assessed using the Neuropsychiatric Inventory, are associated with caregiver burden. We performed a systematic review of English language, peer-reviewed articles retrieved from MEDLINE, PSYCINFO, and EMBASE. A total of 13 studies met the inclusion criteria. Four studies examined the association between individual NPSs and caregiver burden using the Spearman rank correlation test, while three used Pearson's correlation test. Of the remaining studies, five used multiple regression analyses and one the chi-squared test. The majority of included studies did not differentiate between dementia subtypes in the analysis or mainly included only caregivers of people with Alzheimer's disease. The Clinical Dementia Rating score and mean Mini-Mental State Examination score indicate mild to moderate dementia. The majority of caregivers were women, most of whom were children (53.8%) or spouses (36%). The data indicated that irritability, followed by agitation, sleep disturbances, anxiety, apathy, and delusion seem to impact caregiver burden the most. Our principal finding is that irritability, agitation, sleep disturbances, anxiety, apathy, and delusion seem to exert the most impact on caregiver burden. Heterogeneity in the measures and statistical analyses used, however, makes it difficult to make conclusive interpretations. Future research in this field would benefit from standardization of the scientific methodology in use. Copyright © 2017 John Wiley & Sons, Ltd. Copyright © 2017 John Wiley & Sons, Ltd.

Caregiver burden in Alzheimer's disease: Moderation effects of social support and mediation effects of positive aspects of caregiving.

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Wang, Zhixin; Ma, Caiyun; Han, Hongjuan; He, Runlian; Zhou, Liye; Liang, Ruifeng; Yu, Hongmei

2018-06-01

Although there are many studies on the relationship between patient-related factors and negative caregiver outcomes, the specifics of this relationship are poorly understood. We aimed to examine whether caregiver social support moderated the relationship between patient factors and negative outcomes for caregivers of community-dwelling older adults with Alzheimer's disease (AD), and whether positive aspects of caregiving mediated this relationship. We conducted a cross-sectional study of patients diagnosed with AD from 2 hospitals and 3 communities in Taiyuan, China, and their caregivers. Latent moderated structural equations and the bias-corrected percentile bootstrap method were used to estimate the parameters of moderating and mediating effects, respectively. Social support significantly moderated the effects of AD patient cognitive function (P mediated the association between patient depression and caregiver burden (P = 0.006), caregiver anxiety (P = 0.007), and caregiver depression (P = 0.034). The findings identify social support as a moderator and positive aspects of caregiving as a mediator of the relationship between patient-related factors and negative caregiver outcomes. The results suggest that health care providers must offer more effective social support for caregivers. In addition, prompt identification of patient and caregiver emotional states could help to improve quality of life. Copyright © 2018 John Wiley & Sons, Ltd.

Burden, quality of life and distress of the main caregiver in head and neck, cervix and rectal cancer patients

Directory of Open Access Journals (Sweden)

Miguel I

2017-03-01

Full Text Available Purpose: Based on Portuguese experience, current practice does not focus sufficiently on the caregiver needs through caring of the cancer patient. Understanding the impact of different tumor types on caregiver burden, quality of life, and distress may help with organizing resources more efficiently to provide enhanced support for patients and caregivers. Methods: Ninety main caregivers of patients with cervix, rectal and head and neck cancer were interviewed at Instituto Português de Oncologia de Lisboa Francisco Gentil. The Portuguese versions of Zarit Burden Interview, Caregiver Quality of Life Index - Cancer (CQOLC Scale and the distress thermometer were used. Results: The majority of caregivers were female (76.7%, median age was 45.5years (20-79, 40% were spouses and 38.7% sons/daughters. Zarit Burden Interview average score was 25.2 ± 11.6, higher on head and neck cancer group. 59.5% of caregivers had moderate burden and no cases of severe burden. Mean quality of life score was 64.8 ± 15.8 which was lower in the head and neck group. Average distress score across the three groups was seven and rectal group presented a lower score than the other two groups. A subgroup analysis (gender, kinship relation, employment status and cohabitation before starting care of caregivers characteristics showed no statistical differences. Conclusion: There were little differences in the experience of caring within caregivers based on the three different cancer groups, although caregivers of patients with head and neck cancer scored consistently worse in the three scales studied. More efforts should be taken to optimize coping strategies for these caregivers, as well as non-cohabitant and active caregivers, who had a worse caring experience.

Caregiving burden and uplifts: a contradiction or a protective partnership for the quality of life of parents and their children with asthma?

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Silva, Neuza; Carona, Carlos; Crespo, Carla; Canavarro, Maria Cristina

2015-04-01

Parental caregiving in the context of pediatric chronic conditions is a multifaceted experience that encompasses negative (burdens) and positive dimensions (uplifts), which may support risk and protective processes that influence family adaptation. This study aimed to examine the caregiving experience of parents caring for a child with asthma and the moderating role of caregiving uplifts on the associations between caregiving burden and quality of life (QoL) of parents and their children. Participants were 180 dyads of children/adolescents with asthma between 8 and 18 years of age and one of their parents. The parents reported on caregiving burden and uplifts and on their QoL, and the children/adolescents completed a self-report measure of generic QoL. Results showed that although parents of children with intermittent asthma and parents of younger children presented higher levels of caregiving burden, noncontrolled asthma was the only clinical variable representing a significant risk factor for decreased QoL in children. Significant negative and positive associations were found between burden dimensions and QoL and between caregiving uplifts and QoL, respectively, in parents and children. Additionally, caregiving uplifts moderated the negative link between relationship burden and parents' QoL. These results suggest that, far from being contradictory, caregiving uplifts may co-occur with high levels of burden and may constitute a protective factor against the deleterious effect of the caregiving burden on parents' QoL and a resource that directly contributes to children's QoL. This risk-resistance approach to family caregiving may contribute to operationalizing strength-based interventions in the context of pediatric asthma. (c) 2015 APA, all rights reserved).

Effect of a multidisciplinary supportive program for family caregivers of patients with heart failure on caregiver burden, quality of life, and depression: A randomized controlled study.

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Hu, Xiaolin; Dolansky, Mary A; Su, Yonglin; Hu, Xiuying; Qu, Moying; Zhou, Lingjuan

2016-10-01

Caregivers of patients with heart failure experience burden and negative health outcomes. Adequate support for family caregivers improves their well-being and the quality of care provided to the patients. However, little is known about the benefits of interventions for caregivers of patients with heart failure in China. To test the effects of a multidisciplinary supportive program for family caregivers on caregiver burden, quality of life, and depression. A randomized controlled design with repeated measures was used in this study. A total of 118 participants were randomized into experimental (n=59) and control groups (n=59) from May to December 2014 in one hospital in Chengdu, People's Republic of China. Participants in the experimental group received a 3-month multidisciplinary supportive program, consisting of three 60-min sessions of group classes, three 30-min peer support groups, and regular telephone follow-ups and consultations, while participants in the control group received usual care only. Outcomes were caregiver burden, quality of life, and depression. Data were collected at baseline, post-test (3 months after discharge), and 3 months after post-test (6 months after discharge). The repeated measures analysis of variance was used to examine the effects of groups, changes over time, and time-group interaction on outcome variables. There were significant improvements in caregiver burden, mental health, and depression after post-test and 3 months after post-test in the experimental group. However, there was no significant improvement in caregivers' physical health at either 3 or 6 months following discharge. A multidisciplinary supportive program for caregivers of heart failure patients had positive effects and provides a unique perspective of an intervention considering Chinese culture and customs. Copyright © 2016 Elsevier Ltd. All rights reserved.

Instruments measuring family or caregiver burden in severe mental illness

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Schene, A. H.; Tessler, R. C.; Gamache, G. M.

1994-01-01

The consequences of psychiatric disorders for family members, usually called family or caregiver burden, have been studied during the last 4 decades. During this period a variety of instruments have been developed to measure the impact of mental illness on family members, but not all instruments

Investigating parents/caregivers financial burden of care for children with non-communicable diseases in Ghana.

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Abuosi, Aaron A; Adzei, Francis A; Anarfi, John; Badasu, Delali M; Atobrah, Deborah; Yawson, Alfred

2015-11-16

The introduction of the Ghana national health insurance scheme (NHIS) has led to progressive and significant increase in utilization of health services. However, the financial burden of caring for children with non-communicable diseases (NCDs) under the dispensation of the NHIS, especially during hospitalization, is less researched. This paper therefore sought to assess the financial burden parents/caregivers face in caring for children hospitalized with NCDs in Ghana, in the era of the Ghana NHIS. We conducted a cross-sectional survey of 225 parents or caregivers of children with NCDS hospitalized in three hospitals. Convenience sampling was used to select those whose children were discharged from hospital after hospitalization. Descriptive statistics such as frequencies and chi-square and logistic regression were used in data analysis. The main outcome variable was financial burden of care, proxied by cost of hospitalization. The independent variable included socio-economic and other indicators such as age, sex, income levels and financial difficulties faced by parents/caregivers. The study found that over 30 % of parents/caregivers spend more than Gh¢50 (25$) as cost of treatment of children hospitalized with NCDs; and over 40 % of parents/caregivers also face financial difficulties in providing health care to their wards. It was also found that even though many children hospitalized with NCDs have been covered by the NHIS, and that the NHIS indeed, provides significant financial relief to parents in the care of children with NCDs, children who are insured still pay out-of-pocket for health care, in spite of their insurance status. It was also found that there is less support from relatives and friends in the care of children hospitalized with NCDs, thus exacerbating parents/caregivers financial burden of caring for the children. Even though health insurance has proven to be of significant relief to the financial burden of caring for children with NCDs

The effectiveness of telehealth care on caregiver burden, mastery of stress, and family function among family caregivers of heart failure patients: a quasi-experimental study.

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Chiang, Li-Chi; Chen, Wan-Chou; Dai, Yu-Tzu; Ho, Yi-Lwun

2012-10-01

Telehealth care was developed to provide home-based monitoring and support for patients with chronic disease. The positive effects on physical outcome have been reported; however, more evidence is required concerning the effects on family caregivers and family function for heart failure patients transitioning from the hospital to home. To evaluate the effectiveness of nursing-led transitional care combining discharge plans and telehealth care on family caregiver burden, stress mastery and family function in family caregivers of heart failure patients compared to those receiving traditional discharge planning only. This is a quasi-experimental study design. Sixty-three patients with heart failure were assessed for eligibility and invited to participate in either telehealth care or standard care in a medical centre from May to October 2010. Three families refused to participate in data collection. Thirty families who chose telehealth care after discharge from the hospital to home comprised the experimental group; the others families receiving discharge planning only comprised the comparison group. Telenursing specialist provided the necessary family nursing interventions by 24-h remote monitoring of patients' health condition and counselling by telephone, helping the family caregivers successfully transition from hospital to home. Data on caregiver burden, stress mastery and family function were collected before discharge from the hospital and one month later at home. Effects of group, time, and group×time interaction were analysed using Mixed Model in SPSS (17.0). Family caregivers in both groups had significantly lower burden, higher stress mastery, and better family function at one-month follow-up compared to before discharge. The total score of caregiver burden, stress mastery and family function was significantly improved for the family caregivers in the experimental group compared to the comparison group at posttest. Two subscales of family function

Family caregiver burden: the burden of caring for lung cancer patients according to the cancer stage and patient quality of life.

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Borges, Eliana Lourenço; Franceschini, Juliana; Costa, Luiza Helena Degani; Fernandes, Ana Luisa Godoy; Jamnik, Sérgio; Santoro, Ilka Lopes

2017-01-01

Patients with lung cancer experience different feelings and reactions, based on their family, social, cultural, and religious backgrounds, which are a source of great distress, not only for the patients but also for their family caregivers. This study aimed to evaluate the impact that lung cancer stage and quality of life (QoL) of lung cancer patients have on caregiver burden. This was a prospective cross-sectional study. Consecutive patient-caregiver dyads were selected and asked to complete the Hospital Anxiety and Depression Scale and the Medical Outcomes Study 36-item ShortForm Health Survey (SF-36). Family caregivers also completed the Caregiver Burden Scale. Group-based modeling was used in order to identify patients with early- or advanced-stage cancer (IA to IIIA vs. IIIB to IV) plus non-impaired or impaired QoL (SF36 total score > 50 vs. ≤ 50). Patient-caregiver dyads were stratified into four groups: early-stage cancer+non-impaired QoL; advanced-stage cancer+non-impaired QoL; early-stage cancer+impaired QoL; and advanced-stage cancer+impaired QoL. We included 91 patient-caregiver dyads. The majority of the patients were male and heavy smokers. Family caregivers were younger and predominantly female. The burden, QoL, level of anxiety, and level of depression of caregivers were more affected by the QoL of the patients than by their lung cancer stage. The family caregivers of the patients with impaired QoL showed a higher median burden than did those of the patients with non-impaired QoL, regardless of disease stage. Caregiver burden is more affected by patient QoL than by lung cancer stage. Pacientes com câncer de pulmão vivenciam diferentes sentimentos e reações, dependendo de sua formação familiar, social, cultural e religiosa, que são fonte de grande sofrimento, não só para os pacientes mas também para seus cuidadores familiares. Este estudo objetivou avaliar o impacto do estágio do câncer de pulmão e da qualidade de vida (QV) dos

Caregiver burden and vocational participation among parents of adolescents with CF.

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Neri, Luca; Lucidi, Vincenzina; Catastini, Paola; Colombo, Carla

2016-03-01

Cystic fibrosis (CF) require parents to make significant lifestyle changes to accommodate their children's treatments. We examined the impact of CF-related caregiving on parents' occupational adjustment and labor supply in terms of organizational changes, presenteeism, and absenteeism. Nineteen Italian CF referral centers joined the LINFA group. We enrolled 168 adolescents with the disease and their parents (n = 225) in a cross-sectional survey research. Patients and their parents answered a self-administered questionnaire (child: SF-12, satisfaction with life, MRC Dyspnea scale; parent: caregiver burden scale, short depression-happiness scale, self-rated health, socio-demographic factors). A pediatrician recorded clinical information (pulmonary exacerbations, CF-related complications, treatment, BMI percentile, Fev1 %). Patients mean age was 16 ± 2.6 and mean BMI percentile was 42.1 ± 29.1; 92 patients (55%) had FEV1 % > 80. Mean parents' age was 45.9 ± 5.9 years, and 59% were women; 75% of women and 24% of men reported to be the primary caregiver. Only 12% had a graduate or post-graduate degree and 56.4% were employed. Approximately 34% of parents reported short depression-happiness scale scores suggestive of clinical depression. Higher caregiving strain was associated with increased likelihood of changing job, work shift schedule, or giving up career opportunities in order to fulfill their caregiving role and increased productivity losses due to family leaves and presenteeism. Caregiving burden is a relevant and frequent issue among parents of adolescent patients with cystic fibrosis. We showed that the humanistic and vocational impact of caring for young patients with the disease is striking and demands health-care and welfare supportive actions. © 2015 Wiley Periodicals, Inc.

Experienced emotional burden in caregivers: psychometric properties of the Involvement Evaluation Questionnaire in caregivers of brain injured patients.

NARCIS (Netherlands)

Geurtsen, G.J.; Meijer, R.; Heugten, C.M. van; Martina, J.D.; Geurts, A.C.H.

2010-01-01

OBJECTIVE: To examine the psychometric properties (internal consistency, discriminant validity, and responsiveness) of the Involvement Evaluation Questionnaire for Brain Injury measuring emotional burden in caregivers of patients with chronic acquired brain injury. DESIGN: Inception cohort study.

Comprehensive Geriatric Assessment (CGA) based risk factors for increased caregiver burden among elderly Asian patients with cancer.

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Rajasekaran, Tanujaa; Tan, Tira; Ong, Whee Sze; Koo, Khai Nee; Chan, Lili; Poon, Donald; Roy Chowdhury, Anupama; Krishna, Lalit; Kanesvaran, Ravindran

2016-05-01

This study aims to identify Comprehensive Geriatric Assessment (CGA) based risk factors to help predict caregiver burden among elderly patients with cancer. The study evaluated 249 patients newly diagnosed with cancer, aged 70years and above, who attended the geriatric oncology clinic at the National Cancer Centre Singapore between 2007 and 2010. Out of 249 patients, 244 patients had information available on family caregiver burden and were analysed. On univariate analysis, ADL dependence, lower IADL scores, ECOG performance status of 3-4, higher fall risk, lower scores in dominant hand grip strength test and mini mental state examination, polypharmacy, higher nutritional risk, haemoglobin geriatric syndromes were significantly associated with mild to severe caregiver burden. On multivariate analysis, only ECOG performance status of 3-4 (odds ratio [OR], 4.47; 95% confidence interval [CI], 2.27-8.80) and haemoglobin patients were stratified into 3 risk groups with different proportion of patients with increased caregiver burden (low risk: 3.9% vs intermediate risk: 18.8% vs high risk: 39.6%; ppatients with cancer. Using these two factors in the clinic may help clinicians identify caregivers at risk and take preventive action to mitigate that. Copyright © 2016 Elsevier Inc. All rights reserved.

Factors associated with the quality of life of subjects with Parkinson's disease and burden on their caregivers.

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Rodríguez-Violante, M; Camacho-Ordoñez, A; Cervantes-Arriaga, A; González-Latapí, P; Velázquez-Osuna, S

2015-06-01

Parkinson's disease affects the quality of life of the individual with the disease in addition to creating a burden on the caregiver. Factors related to these effects include motor and non-motor aspects of the disease, as well as traits inherent to the caregiver. We evaluated subjects with Parkinson's disease using the following instruments: Quality of Life Questionnaire PDQ-8, Movement Disorders Society Unified Parkinson's disease Rating Scale part i to iv (MDS-UPDRS), and Hoehn and Yahr staging. The Zarit Burden Inventory was used to assess all primary caregivers. Major demographic and clinical variables were also recorded. A total of 250 subjects with Parkinson's disease were included, of whom 201 had a primary caregiver. In the multivariate analysis, predictors of poor quality of life for a subject with Parkinson's disease were the MDS-UPDRS I score (β=.39, PParkinson's disease and the caregiver's perceived burden. However, the factors that determine each situation appear to be distinct. Copyright © 2013 Sociedad Española de Neurología. Published by Elsevier España, S.L.U. All rights reserved.

Self-characterizations of adult female informal caregivers: gender identity and the bearing of burden.

Science.gov (United States)

Kramer, Maeona K

2005-01-01

Gender identity is a powerful aspect of self that shapes values, attitudes, and conduct. Family caregivers, particularly women, tend to forgo institutionalization of care recipients even when care demands are overwhelming. The reluctance of women to relinquish care raises questions about the relationship between gender identity and the bearing of burden. To illuminate the relationship between gender and burden, 36 adult women caring for highly dependent adults were asked to describe the nature of "self"; that is, how they characterized themselves as a person. Results were tabulated and critically examined in relation to stereotypical gender traits, as well as social and political processes that create gender dichotomies. Overall, self-characterizations indicated caregivers had internalized stereotypical female gender traits that support and facilitate the enduring of burden.

Burden among Family Caregivers of Dementia in the Oldest-Old: An Exploratory Study

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Khin Khin Win

2017-11-01

Full Text Available BackgroundWith >85 years, the fastest growing age segment in developed countries, dementia in the oldest-old is projected to increase exponentially. Being older, caregivers of dementia in oldest-old (CDOO may experience unique challenges compared with younger-age groups. Thus, we aim to explore demographic characteristics and burden pattern among CDOO.MethodsWe studied 458 family caregiver-patient dyads attending an outpatient memory clinic. We classified patients into three age-groups: <75, 75–84, and ≥85 years. We measured caregiver burden using the Zarit Burden Interview (ZBI 4-factor structure described by Cheah et al. (1. We compared care recipient characteristics, caregiver demographics, and ZBI total/factors scores between the three age-groups, and performed 2-way analysis of variance (ANOVA to ascertain the effect of age-group by disease severity interaction.ResultsOldest-old care recipients were more impaired in cognitive function and instrumental ADL; there was no difference in behavior and basic ADL. Compared with the other two age-groups, CDOO were older (mean age: 50.4 vs 55.5 vs 56.8 years, P < 0.01, and overwhelmingly adult children (85.9% as opposed to spouses (5.3%. CDOO also had higher ZBI total score, role strain, and personal strain (all P < 0.05. However, there was no difference in worry about performance scores. 2-way ANOVA did not reveal significant age-group by disease severity interaction for ZBI total and factor scores, although distinctive differences were seen between role/personal strain with worry about performance in mild cognitive impairment and very mild dementia.ConclusionOur study highlighted that CDOO were mainly older adult children who experienced significant role and personal strain independent of disease severity while caring for their family member with more impaired cognitive and physical function. These results pave the way for targeted interventions to address the unique burden faced

Psychometric Properties of the Turkish Version of Caregiver Burden Index (CBI) for Parents of Children with Allergies.

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Ekim, Ayfer; Hecan, Melis; Oren, Serkan

Childhood chronic diseases have a great impact, including physiological, social and financial burdens, on parents. The concept of "caregiver burden" is gaining importance to understand the effects of allergic diseases and plan family-centered strategies. The purpose of this study was to examine the psychometric properties of the Caregiver Burden Index (CBI) in Turkish mothers of children with allergies. The participants of this methodological study were 213 mothers of children with allergies between 6 and 12years. Construct validity was evaluated through factor analysis and reliability was evaluated through internal consistency and item-total correlation. In reliability analysis, the overall Cronbach's alpha value (0.85) demonstrated a high level of reliability. The corrected item-total correlation varied between 0.63 and 0.84. In exploratory factor analysis, it was detected that 3 factors structure explained 73.6% of the total variance. This study indicated that the CBI is a valid and reliable tool to assess the caregiver burden of mothers of Turkish children with allergies. The results of this study contribute to the development and implementation of evidence based models of care that address the caregiver burden needs of parents whose children have allergies. Copyright © 2017 Elsevier Inc. All rights reserved.

Impact of Alzheimer's Disease on Caregiver Questionnaire: internal consistency, convergent validity, and test-retest reliability of a new measure for assessing caregiver burden.

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Cole, Jason C; Ito, Diane; Chen, Yaozhu J; Cheng, Rebecca; Bolognese, Jennifer; Li-McLeod, Josephine

2014-09-04

There is a lack of validated instruments to measure the level of burden of Alzheimer's disease (AD) on caregivers. The Impact of Alzheimer's Disease on Caregiver Questionnaire (IADCQ) is a 12-item instrument with a seven-day recall period that measures AD caregiver's burden across emotional, physical, social, financial, sleep, and time aspects. Primary objectives of this study were to evaluate psychometric properties of IADCQ administered on the Web and to determine most appropriate scoring algorithm. A national sample of 200 unpaid AD caregivers participated in this study by completing the Web-based version of IADCQ and Short Form-12 Health Survey Version 2 (SF-12v2™). The SF-12v2 was used to measure convergent validity of IADCQ scores and to provide an understanding of the overall health-related quality of life of sampled AD caregivers. The IADCQ survey was also completed four weeks later by a randomly selected subgroup of 50 participants to assess test-retest reliability. Confirmatory factor analysis (CFA) was implemented to test the dimensionality of the IADCQ items. Classical item-level and scale-level psychometric analyses were conducted to estimate psychometric characteristics of the instrument. Test-retest reliability was performed to evaluate the instrument's stability and consistency over time. Virtually none (2%) of the respondents had either floor or ceiling effects, indicating the IADCQ covers an ideal range of burden. A single-factor model obtained appropriate goodness of fit and provided evidence that a simple sum score of the 12 items of IADCQ can be used to measure AD caregiver's burden. Scales-level reliability was supported with a coefficient alpha of 0.93 and an intra-class correlation coefficient (for test-retest reliability) of 0.68 (95% CI: 0.50-0.80). Low-moderate negative correlations were observed between the IADCQ and scales of the SF-12v2. The study findings suggest the IADCQ has appropriate psychometric characteristics as a

Stressors, social support, depressive symptoms and general health status of Taiwanese caregivers of persons with stroke or Alzheimer's disease.

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Huang, Chiung-Yu; Sousa, Valmi D; Perng, Shao-Jen; Hwang, Mei-Yi; Tsai, Chun-Ching; Huang, Mei-Huang; Yao, Shu-Ying

2009-02-01

This study examined the relationships among stressors, social support, depressive symptoms and the general health status of Taiwanese caregivers of individuals with stroke or Alzheimer's disease. Caring for a disabled or cognitively impaired person can be extremely stressful and often has adverse effects on caregivers' health. While research on caregiving in Taiwan has examined caregivers' characteristics, caregivers' need and caregivers' burden in caring for older people in general, little is known about Taiwanese caregivers of individuals with stroke or Alzheimer's disease. Cross-sectional, descriptive correlation design. Data were obtained from a convenience sample of 103 Taiwanese informal caregivers in the South of Taiwan and analysed using descriptive statistics, Pearson's correlations, multiple and hierarchical regressions and t-tests. Caregivers who had lower household incomes and were taking care of individuals with more behaviour problems had more depressive symptoms. In addition, caregivers who were older and were taking care of individuals with more behaviour problems had worse general health. Caregivers who had more emotional support had less depressive symptoms. Caregivers of persons with Alzheimer's disease had more depressive symptoms and worse general health than caregivers of persons with stroke. Only emotional support moderated the relationship between one of the stressors (household income) and depressive symptoms. The findings of this study may be helpful for nurses and other health care professionals in designing effective interventions to minimise the negative impacts of stressors on the psychological and general health of caregivers in Taiwan.

Correlation between depression and burden observed in informal caregivers of people suffering from dementia with time spent on caregiving and dementia severity

DEFF Research Database (Denmark)

Gregersen, Rikke

2016-01-01

The aim of thestudy is to compare data on the examined populationof informal caregivers of people sufferingfrom dementia with previous studies, aswell as to assess the correlation between (i) depressiondetermined on the basis of the Centerfor Epidemiologic Studies Depression Scaleand (ii) caregiver...... dementia fromdifferent backgrounds were evaluated usingthe Zarit Caregiver Burden Scale and the Centerfor Epidemiologic Studies DepressionScale. Demographic data about the time devotedto caregiving and the number of hoursspend on caregiving weekly were gathered. Thetype of dementia and its stage were...... registeredusing the Global Deterioration Scale (GDS).With the aid of the Statistica StatSoft program,mutual correlations between the parameterswere measured. The study was conducted withinthe framework of AAL UnderstAID – a platformthat supports and helps to understandand assist caregivers in the care...

[Reducing the Care-Related Burdens of a Family Caregiver of a Person With Mild Cognitive Impairment: A Home-Based Case Management Program].

Science.gov (United States)

Chen, Min-Chia; Chiu, Yi-Chen; Wei, Pi-Mei; Hsu, Wen-Chuin

2017-06-01

The long-term care of cognitively impaired patients with concomitant behavioral problems brings great stress and burdens to family caregivers. The present article describes a family caregiver with multiple chronic diseases who concurrently shouldered primary care responsibilities for her husband, a patient with mild cognitive impairment, problematic behaviors, and medication non-adherence issues. The period of care was between September 23rd and December 29th, 2015. Data on physiological, psychological, and social burdens were collected based on a stress process model for family caregiving. We then applied a home-based, individually tailored intervention, which included nursing education, skills training, listening/counseling, and resource connecting, that effectively helped the family caregiver reduce her burdens. Our assessment identified nursing-care-related problems as the primary source of caregiver burden in this case, with identified stressors including a lack of knowledge regarding patient care, medication management problems, sleep disorders, and inadequate social resources. Using continuous care interactions, we established a trust relationship with the family caregiver, prioritized her needs, and provided dementia care knowledge and skills, which gradually improved her caregiving competence. Our instruction included increasing caregiver understanding of the disease course of dementia, related problematic behaviors, and medication management. Our intervention enhanced the disease awareness of the caregiver and helped her become more positive about her caregiving tasks. Therefore, the negative impacts on her family were reduced. Social support and long-term care resources further reduced her burden and improved her quality of life.

The burden of family caregiving in the United States: work productivity, health care resource utilization, and mental health among employed adults

Directory of Open Access Journals (Sweden)

Hopps M

2017-12-01

Full Text Available Markay Hopps, Laura Iadeluca, Margaret McDonald, Geoffrey T MakinsonPfizer Inc., New York, NY, USA Background: Family caregiving is an increasingly important component of care for patients and the elderly. Objective: The aim of this study is to characterize the burden of family caregiving among employed adults. Methods: Employed adults (≥18 years from the 2013 US National Health and Wellness Survey (NHWS were classified as family caregivers if they reported currently caring for at least one adult relative. Chi-square tests and one-way analyses of variance assessed whether employed caregivers, weighted to the US population, differed from employed non-caregivers on behavioral characteristics, workplace productivity, and health care resource utilization. Results: Eight million workers were family caregivers in the United States, more often female than male (51% vs. 49%, P < 0.05, and 53% were between 40 and 64 years of age. Eighteen percent of caregivers were Hispanic compared with 15% of non-caregivers (P < 0.05. Similar behavioral characteristics between caregivers and non-caregivers included daily alcohol consumption (6% vs. 5% and lack of vigorous exercise (25% vs. 29%, but caregivers had a higher prevalence of smoking (26% vs. 19%, P < 0.05. Caregivers reported a higher mean percentage of work time missed (8% vs. 4%, P < 0.05 and greater productivity impairment (24% vs. 14%, P < 0.05. Some form of depression was reported by 53% of caregivers compared with 32% of non-caregivers (P < 0.05, and more caregivers had self-reported insomnia than non-caregivers (46% vs. 37%, P < 0.05. The number of self-reported diagnosed comorbidities was higher among caregivers compared with that of non-caregivers (5.0 vs. 3.1, P < 0.05, as was the mean number of outpatient visits in the previous 6 months (4.1 vs. 2.7, P < 0.05. Conclusion: Family caregiving is associated with a multidimensional burden that impacts caregivers and has implications for

Emotion recognition in mild cognitive impairment: relationship to psychosocial disability and caregiver burden.

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McCade, Donna; Savage, Greg; Guastella, Adam; Hickie, Ian B; Lewis, Simon J G; Naismith, Sharon L

2013-09-01

Impaired emotion recognition in dementia is associated with increased patient agitation, behavior management difficulties, and caregiver burden. Emerging evidence supports the presence of very early emotion recognition difficulties in mild cognitive impairment (MCI); however, the relationship between these impairments and psychosocial measures is not yet explored. Emotion recognition abilities of 27 patients with nonamnestic MCI (naMCI), 29 patients with amnestic MCI (aMCI), and 22 control participants were assessed. Self-report measures assessed patient functional disability, while informants rated the degree of burden they experienced. Difficulties in recognizing anger was evident in the amnestic subtype. Although both the patient groups reported greater social functioning disability, compared with the controls, a relationship between social dysfunction and anger recognition was evident only for patients with naMCI. A significant association was found between burden and anger recognition in patients with aMCI. Impaired emotion recognition abilities impact MCI subtypes differentially. Interventions targeted at patients with MCI, and caregivers are warranted.

Development and psychometric testing of a chinese version of the caregiver burden index for parents of children with allergies.

Science.gov (United States)

Liu, Pei-Ching; Gau, Bih-Shya; Hung, Chao-Chia

2015-01-01

BACKGROUNG: No specific instrument has thus far been developed for measuring the caregiver burden perceived by parents of children with allergies (CWA). To determine the psychometric properties of the Caregiver Burden Index (CBI). A mixed-methods design was adopted to evaluate the psychometric properties of the scale. The content validity index was 0.89, and the internal consistency was high with a coefficient alpha of 0.98. Three factors were extracted after exploratory factor analysis. The study findings suggest that the CBI has sufficient reliability and validity to evaluate the caregiver burden of parents of CWA. Copyright © 2015 Elsevier Inc. All rights reserved.

The relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden

Directory of Open Access Journals (Sweden)

Torabi Chafjiri R

2017-03-01

Full Text Available Razieh Torabi Chafjiri,1 Nasrin Navabi,2 Abbas Shamsalinia,2 Fatemeh Ghaffari2 1Gilan University of Medical Sciences, Rudsar Shahid Ansari Hospital, Rudsar, Gilan, Iran; 2Ramsar Nursing Care Research Center, School of Nursing and Midwifery, Babol University of Medical Sciences, Babol, Mazandaran, Iran Introduction: Stroke is a chronic condition that necessitates multidimensional and overwhelming care. The caregivers of stroke patients are faced with various stressors that can threaten different aspects of their health, especially their mental health. Spiritual attitude and being spiritually oriented contribute significantly to mental health and can be used as a strategy for adapting to the stressful events that are part of the role of caregiving. This study was therefore conducted to investigate the relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden.Methods: This descriptive cross-sectional study was conducted in 2016. The study population consisted of all the family caregivers of older patients with stroke presenting to health care centers and nursing service companies of Gilan Province in Iran. The participants were selected through convenience sampling and consisted of 407 participants. Data were collected using the Spiritual Attitude Scale and the Caregiver Burden Inventory and were then analyzed in SPSS-18 using Pearson’s correlation coefficient at a significance level of 0.05.Results: The results showed that 88.9% of the caregivers were females. The mean age of the participants was 38.3±8.8 years. The duration of caregiving was <5 years in 84.4% of the participants, while its mean was 4.2±2.5 years. The mean score of spiritual attitude was 108.77±6.20. The majority of the participants (49.3% had moderate and relatively favorable spiritual attitude (a score of 72–120, 27.8% had high or favorable spiritual attitude; 8.7% had mild burden, 54.4% had moderate burden

Mothers of Children with Developmental Disorders in the Bedouin Community in Israel: Family Functioning, Caregiver Burden, and Coping Abilities

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Manor-Binyamini, Iris

2011-01-01

This preliminary study compares the family functioning, caregiver burden, and coping abilities between mothers of 300 children with developmental disorders and mothers of 100 children with no such disorders in the Bedouin community in Israel. The mothers completed the McMaster Family Assessment Device Scale, the Caregiver Burden Index, and the…

Adaptation and analysis of psychometric features of the Caregiver Risk Screen: a tool for detecting the risk of burden in family caregivers.

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Martinez-Rodriguez, Silvia; Ortiz-Marqués, Nuria; Iraurgi, Ioseba; Carrasco, María; Miguel, José J

2013-05-01

There are a limited number of scales available in the Spanish language that can be used to detect burden among individuals who care for a dependent family member. The purpose of this work was to adapt and validate the Caregiver Risk Screen (CRS) scale developed by Guberman et al. (2001) (Guberman, N., Keefe, J., Fancey, P., Nahmiash, D. and Barylak, L. (2001). Development of Screening and Assessment Tools for Family Caregivers: Final Report. Montreal, Canada: Health Transition Fund). The sample was made up of 302 informal caregivers of dependent family members (average age 57.3 years, and 78.9% were women). Scale structure was subjected to a confirmatory factor analysis. Concurrent and convergent validity were assessed by correlation with validated questionnaires for measuring burden (Zarit Burden Inventory (ZBI)) and psychological health (SCL-90-R). The results show a high level of internal consistency (Cronbach's alpha = 0.86), suitable fit of the one-dimensional model tested via confirmatory factor analysis (GFI = 0.91; CFI = 0.91; RMSEA = 0.097), and appropriate convergent validity with similar constructs (r = 0.77 with ZBI; and r-values between 0.45 and 0.63 with SCL-90-R dimensions). The findings are promising in terms of their adaptation of the CRS to Spanish, and the results enable us to draw the conclusion that the CRS is a suitable tool for assessing and detecting strain in family caregivers. Nevertheless, new research is required that explores all the psychometric features on the scale.

Effects of aromatherapy on agitation and related caregiver burden in patients with moderate to severe dementia: A pilot study.

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Turten Kaymaz, Tugce; Ozdemir, Leyla

We examined the effects of aromatherapy on agitation in patients with dementia and evaluated related caregiver burden. Patients and their caregivers from two hospitals in Turkey were selected and divided into an intervention group (n = 14) and a control group (n = 14). Patients were stratified according to their dementia phase and intake of antipsychotic medication. The intervention group received aromatherapy via massage and inhalation at home for 4 weeks. The control group received no intervention. Data were collected using the Neuropsychiatric Inventory (NPI), the Cohen-Mansfield Agitation Inventory (CMAI) and the Zarit Burden Interview (ZBI). At 2 and 4 weeks, the NPI scores were significantly lower in the intervention group (p aromatherapy, agitation, neuropsychiatric symptoms, and caregiver distress significantly reduced, and aromatherapy prevented caregiver burden increase. Copyright © 2016 Elsevier Inc. All rights reserved.

Perceived burden of care and reported coping strategies and needs for family caregivers of people with mental disorders in Zimbabwe

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Bazondlile D. Marimbe

2016-08-01

Conclusion: Caregivers carry a substantial and frequently unrecognized burden of caring for a family member with mental disorder. Better support is needed from health professionals and social services to help them cope better. Further research is required to quantitatively measure caregiver burden and evaluate potential interventions in Zimbabwe.

The influence of a mental health home visit service partnership intervention on the caregivers' home visit service satisfaction and care burden.

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Cheng, Jui-Fen; Huang, Xuan-Yi; Lin, Mei-Jue; Wang, Ya-Hui; Yeh, Tzu-Pei

2018-02-01

To investigate a community-based and hospital-based home visit partnership intervention in improving caregivers' satisfaction with home service and reducing caregiver burden. The community-oriented mental healthcare model prevails internationally. After patients return to the community, family caregivers are the patients' main support system and they also take the most of the burden of caring for patients. It is important to assist these caregivers by building good community healthcare models. A longitudinal quasi-experimental quantitative design. The experimental group (n = 109) involved "partnership" intervention, and the control group (n = 101) maintained routine home visits. The results were measured before the intervention, 6 and 12 months after the partnership intervention. Six months after the partnership intervention, the satisfaction of the experimental group was higher than the control group for several aspects of care. Although the care burden was reduced in the experimental group, there was no significant difference between the two groups. This study confirms that the partnership intervention can significantly improve caregiver satisfaction with home services, without reducing the care burden. The community-based and hospital-based mental health home visit service partnership programme could improve the main caregiver's satisfaction with the mental health home visit services, while the reduction in care burden may need government policies for the provision of more individual and comprehensive assistance. © 2017 John Wiley & Sons Ltd.

Economic burden to primary informal caregivers of hospitalized older adults in Mexico: a cohort study.

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López-Ortega, Mariana; García-Peña, Carmen; Granados-García, Víctor; García-González, José Juan; Pérez-Zepeda, Mario Ulises

2013-02-08

The burden of out of pocket spending for the Mexican population is high compared to other countries. Even patients insured by social security institutions have to face the cost of health goods, services or nonmedical expenses related to their illness. Primary caregivers, in addition, experience losses in productivity by taking up responsibilities in care giving activities. This situation represents a mayor economic burden in an acute care setting for elderly population. There is evidence that specialized geriatric services could represent lower overall costs in these circumstances and could help reduce these burdens.The aim of this study was to investigate economic burden differences in caregivers of elderly patients comparing two acute care services (Geriatric and Internal Medicine). Specifically, economic costs associated with hospitalization of older adults in these two settings by evaluating health care related out of pocket expenditures (OOPE), non-medical OOPE and indirect costs. A comparative analysis of direct and indirect costs in hospitalised elderly patients (60-year or older) and their primary informal caregivers in two health care settings, using a prospective cohort was performed. Economic burden was measured by out of pocket expenses and indirect costs (productivity lost) due to care giving activities. The analysis included a two-part model, the first one allowing the estimation of the probability of observing any health care related and non-medical OOPE; and the second one, the positive observations or expenditures. A total of 210 subjects were followed during their hospital stay. Of the total number of subjects 95% reported at least one non-medical OOPE, being daily transportation the most common expense. Regarding medical OOPE, medicines were the most common expense, and the mean numbers of days without income were 4.12 days. Both OOPE and indirect costs were significantly different between type of services, with less overall economic burden to

The Zarit Caregiver Burden Interview Short Form (ZBI-12) in spouses of Veterans with Chronic Spinal Cord Injury, Validity and Reliability of the Persian Version.

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Rajabi-Mashhadi, Mohammad T; Mashhadinejad, Hosein; Ebrahimzadeh, Mohammad H; Golhasani-Keshtan, Farideh; Ebrahimi, Hanieh; Zarei, Zahra

2015-01-01

To test the psychometric properties of the Persian version of Zarit Burden Interview (ZBI-12) in the Iranian population. After translating and cultural adaptation of the questionnaire into Persian, 100 caregiver spouses of Iran- Iraq war (1980-88) veterans with chronic spinal cord injury who live in the city of Mashhad, Iran, invited to participate in the study. The Persian version of ZBI-12 accompanied with the Persian SF-36 was completed by the caregivers to test validity of the Persian ZBI-12.A Pearson`s correlation coefficient was calculated for validity testing. In order to assess reliability of the Persian ZBI-12, we administered the ZBI-12 randomly in 48 caregiver spouses again 3 days later. Generally, the internal consistency of the questionnaire was found to be strong (Cronbach's alpha 0.77). Intercorrelation matrix between the different domains of ZBI-12 at test-retest was 0.78. The results revealed that majority of questions the Persian ZBI_12 have a significant correlation to each other. In terms of validity, our results showed that there is significant correlations between some domains of the Persian version the Short Form Health Survey -36 with the Persian Zarit Burden Interview such as Q1 with Role Physical (P=0.03),General Health (P=0.034),Social Functional (0.037), Mental Health (0.023) and Q3 with Physical Function (P=0.001),Viltality (0.002), Socil Function (0.001). Our findings suggest that the Zarit Burden Interview Persian version is both a valid and reliable instrument for measuring the burden of caregivers of individuals with chronic spinal cord injury.

Caregiver Burdens and Preventive Dental Care for Children with Autism Spectrum disorder, developmental disability and/or mental health conditions: National Survey of CSHCN, 2009–10

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Vohra, Rini; Sambamoorthi, Usha; Madhavan, S. Suresh

2016-01-01

Objective The purpose of this study is to examine the burdens of caregivers on one perception of the need and receipt of preventive dental care for a subset of children with special health care needs—children with Autism Spectrum disorder, developmental disability and/or mental health conditions (CASD/DD/MHC). Methods The authors used the 2009–2010 National Survey of CSHCN. The survey included questions addressing preventive dental care and caregivers’ financial, employment, and time-related burdens. The associations of these burdens on perceptions and receipt of preventive dental care use were analyzed with bivariate Chi square analyses and multinomial logistic regressions for CASD/DD/MHC (N=16,323). Results Overall, 16.3% of CASD/DD/MHC had an unmet preventive dental care need. There were 40.0% of caregivers who reported financial burden, 20.3% who reported employment burden, and 10.8% who reported time burden. A higher percentage of caregivers with financial burden, employment burden, and time-related burden reported that their CASD/DD/MHC did not receive needed preventive dental care (14.1 %, 16.5%, 17.7% respectively) compared to caregivers without financial, employment, or time burdens (9.0%, 9.6%, 11.0% respectively). Caregivers with financial burden (adjusted multinomial odds ratio, 1.38 [95%CI: 1.02, 1.86]) and employment burden (adjusted multinomial odds ratio, 1.45 [95%CI: 1.02, 2.06]) were more likely to report that their child did not receive preventive dental care despite perceived need compared to caregivers without financial or employment burdens. Conclusions for practice Unmet needs for preventive dental care were associated with employment and financial burdens of the caregivers of CASD/DD/MHC. PMID:27465058

Predictors of the health-related quality of life of Chinese people with major neurocognitive disorders and their caregivers: The roles of self-esteem and caregiver's burden.

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Young, Daniel Kim-Wan; Ng, Petrus Yat-Nam; Kwok, Timothy

2017-12-01

The present research study aimed to identify and compare the clinical and non-clinical factors that predict the self-reported and proxy-reported health-related quality of life (HRQoL) of people with major neurocognitive disorder (PwND) who are living at home in a Chinese society. A total of 57 Chinese PwND-family caregiver dyads that were using the services of local senior centers were recruited through a cross-sectional survey with convenience sampling. Each PwND and caregiver rated the PwND's HRQoL independently by using the Quality of Life-Alzheimer's disease measure. Additional measures included the Rosenberg Self-Esteem Scale (RSES), Index for Managing Memory Loss, Geriatric Depression Scale, Cornell Scale for Depression in Dementia and Zarit Burden Inventory. The results of hierarchical multiple linear regression analyses showed that the PwND's self-rated HRQoL and caregiver-rated HRQoL were found to be predicted by different clinical and non-clinical variables. In particular, the self-esteem of PwND had the highest predictive power for the self-rated HRQoL, whereas the caregiver burden is the only significant predictor for the caregiver-rated HRQoL. In the present study, the self-esteem of PwND and the caregiver's burden were found to be important factors predicting self-rated HRQoL and caregiver-rated HRQoL respectively, which is probably because of the influence of traditional Chinese cultural values. Thus, it is important for non-pharmacological interventions to address these special needs to promote HRQoL for this population. Geriatr Gerontol Int 2017; 17: 2319-2328. © 2017 Japan Geriatrics Society.

Positive Aspects of Caregiving and Its Correlates among Caregivers of Bipolar Affective Disorder.

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Grover, S; Kate, N; Chakrabarti, S; Avasthi, A

2017-12-01

To evaluate the positive aspects of caregiving and its correlates (socio-demographic and clinical variables, caregiver burden, coping, quality of life, psychological morbidity) in the primary caregivers of patients with bipolar affective disorder (BPAD). A total of 60 primary caregivers of patients with a diagnosis of BPAD were evaluated on the Scale for Positive Aspects of Caregiving Experience (SPACE) and the Hindi version of Involvement Evaluation Questionnaire, Family Burden Interview Schedule (FBIS), modified Hindi version of Coping Checklist, shorter Hindi version of the World Health Organization Quality of Life (WHOQOL-BREF), and Hindi translated version of 12-item General Health Questionnaire (GHQ-12). Caregivers of patients with BPAD had the highest mean score in the SPACE domain of Motivation for caregiving role (2.45), followed by Caregiver satisfaction (2.38) and Caregiving personal gains (2.20). The mean score was the lowest for the domain of Self-esteem and social aspect of caring (2.01). In terms of correlations, age of onset of BPAD had a negative correlation with various domains of SPACE. The mean number of total lifetime affective and depressive episodes correlated positively with Self-esteem and social aspect of caring. Caregiver satisfaction correlated negatively with FBIS domains of Disruption of routine family activities, Effect on mental health of others, and subjective burden. Coercion as a coping mechanism correlated positively with domains of Caregiving personal gains, Caregiver satisfaction, and the total score on SPACE. Three (Physical health, Psychological health, Environment) out of 5 domains of the WHOQOL-BREF correlated positively with the total SPACE score. No association was noted between GHQ-12 and SPACE scores. Positive caregiving experience in primary caregivers of patients with BPAD is associated with better quality of life of the caregivers.

Exploring the associations between spiritual well-being, burden, and quality of life in family caregivers of cancer patients.

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Spatuzzi, Roberta; Giulietti, Maria Velia; Ricciuti, Marcello; Merico, Fabiana; Fabbietti, Paolo; Raucci, Letizia; Bilancia, Domenico; Cormio, Claudia; Vespa, Anna

2018-05-11

The spiritual dimension is important in the process of coping with stress and may be of special relevance for those caring for cancer patients in the various phases of caregivership, although current attention is most prevalent at the end of life. This study explores the associations among spiritual well-being (SWB), caregiver burden, and quality of life (QoL) in family caregivers of patients with cancer during the course of the disease. This is a cross-sectional study. All participants (n = 199) underwent the following self-report questionnaires: the SWB-Index, the Medical Outcomes Study Short Form, and the Caregiver Burden Inventory (CBI). SWB scores were dichotomized at a cutoff corresponding to the 75th percentile. Statistical analyses were made using the Student t or by chi-square test to compare high and low SWB groups.ResultThe high SWB group reported significantly better Medical Outcomes Study Short Form scores in bodily pain (p = 0.035), vitality (p scale. The high SWB group also had better CBI scores in the physical (p = 0.049) and developmental burden (p = 0.053) subscales. There were no significant differences in the other CBI scores (overall and sections).Significance of resultsThis study points out that high SWB caregivers have a more positive QoL and burden. Knowledge of these associations calls for more attention on the part of healthcare professionals toward spiritual resources among family cancer caregivers from the moment of diagnosis and across the entire cancer trajectory.

A tailored relocation stress intervention programme for family caregivers of patients transferred from a surgical intensive care unit to a general ward.

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Lee, Seul; Oh, HyunSoo; Suh, YeonOk; Seo, WhaSook

2017-03-01

To develop and examine a relocation stress intervention programme tailored for the family caregivers of patients scheduled for transfer from a surgical intensive care unit to a general ward. Family relocation stress syndrome has been reported to be similar to that exhibited by patients, and investigators have emphasised that nurses should make special efforts to relieve family relocation stress to maximise positive contributions to the well-being of patients by family caregivers. A nonequivalent control group, nonsynchronised pretest-post-test design was adopted. The study subjects were 60 family caregivers of patients with neurosurgical or general surgical conditions in the surgical intensive care unit of a university hospital located in Incheon, South Korea. Relocation stress and family burden were evaluated at three times, that is before intervention, immediately after transfer and four to five days after transfer. This relocation stress intervention programme was developed for the family caregivers based on disease characteristics and relocation-related needs. In the experimental group, relocation stress levels significantly and continuously decreased after intervention, whereas in the control group, a slight nonsignificant trend was observed. Family burden levels in the control group increased significantly after transfer, whereas burden levels in the experimental group increased only marginally and nonsignificantly. No significant between-group differences in relocation stress or family burden levels were observed after intervention. Relocation stress levels of family caregivers were significantly decreased after intervention in the experimental group, which indicates that the devised family relocation stress intervention programme effectively alleviated family relocation stress. The devised intervention programme, which was tailored to disease characteristics and relocation-related needs, may enhance the practicality and efficacy of relocation stress

The relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden.

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Torabi Chafjiri, Razieh; Navabi, Nasrin; Shamsalinia, Abbas; Ghaffari, Fatemeh

2017-01-01

Stroke is a chronic condition that necessitates multidimensional and overwhelming care. The caregivers of stroke patients are faced with various stressors that can threaten different aspects of their health, especially their mental health. Spiritual attitude and being spiritually oriented contribute significantly to mental health and can be used as a strategy for adapting to the stressful events that are part of the role of caregiving. This study was therefore conducted to investigate the relationship between the spiritual attitude of the family caregivers of older patients with stroke and their burden. This descriptive cross-sectional study was conducted in 2016. The study population consisted of all the family caregivers of older patients with stroke presenting to health care centers and nursing service companies of Gilan Province in Iran. The participants were selected through convenience sampling and consisted of 407 participants. Data were collected using the Spiritual Attitude Scale and the Caregiver Burden Inventory and were then analyzed in SPSS-18 using Pearson's correlation coefficient at a significance level of 0.05. The results showed that 88.9% of the caregivers were females. The mean age of the participants was 38.3±8.8 years. The duration of caregiving was relationship was observed in this study between the mean score of spiritual attitude and the total score of burden in all its dimensions, namely, time dependence, as well as the developmental, physical, social and emotional dimensions. Providing strategies for improving spirituality, such as teaching spiritual self-care, can improve their burden. Given that such strategies are psychologically approved and pose no side effects, they can be used as an effective, low-cost and risk-free approach for all caregivers, so that they can acquire the necessary spiritual support for overcoming the stress caused by caring for family members through the reinforcement of their spiritual beliefs in the ultimate

Prospective study of a community reintegration programme for patients with acquired chronic brain injury: effects on caregivers' emotional burden and family functioning.

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Geurtsen, Gert J; van Heugten, Caroline M; Meijer, Ron; Martina, Juan D; Geurts, Alexander C H

2011-01-01

To examine the effects of a residential community reintegration programme for patients with psychosocial problems due to acquired chronic brain injury on caregivers' emotional burden and family functioning. A prospective cohort study with waiting list control and 1-year follow-up. Forty-one caregivers of which 28 female. Mean age was 48 ± 8.3 years and 33 caregivers were parents. A structured residential treatment programme was offered to the patients directed at domestic life, work, leisure time and social interactions. The Involvement Evaluation Questionnaire for Brain Injury (IEQ-BI) for emotional burden, the General Health Questionnaire (GHQ) for psychological health and the Family Assessment Device (FAD) for family functioning were used. There was an overall significant effect of Time for all outcome measures (MANOVA T(2 )= 9.1, F(15,317) = 64.1, p = 0.000). The effect sizes were moderate for three IEQ-BI sub-scales (partial η(2 )= 0.12-0.17) and small for two sub-scales (partial η(2 )= 0.05-0.09). The effect size for GHQ was moderate (partial η(2 )= 0.11). As for FAD no significant time effects were present (partial η(2 )= 0.00-0.04). Emotional burden and psychological health of the caregivers improved significantly when patients with acquired brain injury and psychosocial problems followed a residential community reintegration programme. Family dynamics remained stable.

Subjective burden among spousal and adult-child informal caregivers of older adults : results from a longitudinal cohort study

NARCIS (Netherlands)

Oldenkamp, Marloes; Hagedoorn, Mariët; Slaets, Joris; Stolk, Ronald; Wittek, Rafael; Smidt, Nynke

2016-01-01

Background: Pressures on informal caregivers are likely to increase due to increasing life expectancy and health care costs, which stresses the importance of prevention of subjective burden. The present study examined the correlates of overall subjective burden and multiple burden dimensions among

Caregiving and Its Resulting Effects—The Care Study to Evaluate the Effects of Caregiving on Caregivers of Patients with Advanced Cancer in Singapore

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Cheryl Kai Ting Chua

2016-11-01

Full Text Available Informal caregivers (IC are key to enabling home deaths, where preferred, at the end-of-life. Significant morbidity from advanced cancer can make caregiving burdensome. However, knowledge about the nature of the caregiving burden for caregivers in Singapore is limited. Hence, the key objective in this study was to examine the impact of the caregiving burden on quality of life (QOL, mental health and work capacity among local ICs. Eligible English-speaking ICs of hospitalized advanced cancer patients were recruited through non-random sampling. The Zarit Burden Interview (ZBI, Caregiver Quality of Life Index—Cancer (CQOLC, Center for Epidemiologic Studies Depression Scale—Revised (CESD-R, and Work Productivity and Activity Impairment Questionnaire (WPAI were interviewer-administered to eligible ICs. Altogether, 16 ICs were surveyed. The mean age of ICs was 43.8 years. Most were children of patients (43.8%, and eight ICs had high burden (ZBI > 17. Those with ZBI > 17 had lower QOL, higher depression scores as well as greater work and activity impairment. In conclusion, high caregiver burden has adverse effects on QOL, mental health and work productivity. Non-physical elements of caregiving (particularly financial and decision-making and increased number of care roles undertaken by a single IC contribute to high burden. Future interventions for caregiving burden in Singapore should also address the financial and decision-making aspects of caregiving. Outsourcing selected aspects of the caregiving role to community services may reduce the number of caregiving aspects undertaken by a single IC and caregiver burden.

Caregiving and Its Resulting Effects-The Care Study to Evaluate the Effects of Caregiving on Caregivers of Patients with Advanced Cancer in Singapore.

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Chua, Cheryl Kai Ting; Wu, Jun Tian; Wong, Yin Yee; Qu, Limin; Tan, Yung Ying; Neo, Patricia Soek Hui; Pang, Grace Suyin

2016-11-15

Informal caregivers (IC) are key to enabling home deaths, where preferred, at the end-of-life. Significant morbidity from advanced cancer can make caregiving burdensome. However, knowledge about the nature of the caregiving burden for caregivers in Singapore is limited. Hence, the key objective in this study was to examine the impact of the caregiving burden on quality of life (QOL), mental health and work capacity among local ICs. Eligible English-speaking ICs of hospitalized advanced cancer patients were recruited through non-random sampling. The Zarit Burden Interview (ZBI), Caregiver Quality of Life Index-Cancer (CQOLC), Center for Epidemiologic Studies Depression Scale-Revised (CESD-R), and Work Productivity and Activity Impairment Questionnaire (WPAI) were interviewer-administered to eligible ICs. Altogether, 16 ICs were surveyed. The mean age of ICs was 43.8 years. Most were children of patients (43.8%), and eight ICs had high burden (ZBI > 17). Those with ZBI > 17 had lower QOL, higher depression scores as well as greater work and activity impairment. In conclusion, high caregiver burden has adverse effects on QOL, mental health and work productivity. Non-physical elements of caregiving (particularly financial and decision-making) and increased number of care roles undertaken by a single IC contribute to high burden. Future interventions for caregiving burden in Singapore should also address the financial and decision-making aspects of caregiving. Outsourcing selected aspects of the caregiving role to community services may reduce the number of caregiving aspects undertaken by a single IC and caregiver burden.

The effect of group psycho-education program on the burden of family caregivers with multiple sclerosis patients in Isfahan in 2013-2014.

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Pahlavanzadeh, Saeid; Dalvi-Isfahani, Fariba; Alimohammadi, Nasrollah; Chitsaz, Ahmad

2015-01-01

Lack of adequate training and support of primary caregivers of multiple sclerosis (MS) patients is the major factor in causing stress, anxiety, and increase of burden. Therefore, the treatment team members such as psychiatric nurses can help these vulnerable people overcome psychiatric pressures effectively not only through their care and referral role but also through their supportive characteristic, which helps the patients improve their clinical status, together with their social, familial, and work adaptation. Therefore, the researcher tried to identify the effect of a group psycho-education program on the burden family caregivers with MS patients. This is a two-group three-stage clinical trial. The researcher referred to the heads of neurology clinics to present the purpose of the study and to start the sampling. The neurology clinics of AL Zahra University Hospital, and also a Private Neurology Clinic were selected to collect the data of the study. The subjects were randomly selected, and then, assigned to two groups of study and control. Independent t-test showed a significant reduction in family caregivers' burden immediately after and 1-month after intervention in the study group, compared to control. Repeated measure ANOVA showed a significant reduction in caregivers' burden mean score in the study group (P family caregivers' burden, it is recommended to develop and design other programs for the family caregivers of the patients with MS.

The Zarit Caregiver Burden Interview Short Form (ZBI-12 in spouses of Veterans with Chronic Spinal Cord Injury, Validity and Reliability of the Persian Version

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Mohammad T. Rajabi Mashhadi

2015-01-01

Full Text Available Background:  To test the psychometric properties of the Persian version of Zarit Burden Interview (ZBI-12 in the Iranian opulation.  Methods: After translating and cultural adaptation of the questionnaire into Persian, 100 caregiver spouses of Iran-Iraq war (1980-88 veterans with chronic spinal cord injury who live in the city of Mashhad, Iran, invited to participate in the study. The Persian version of ZBI-12 accompanied with the Persian SF-36 was completed by the caregivers to test validity of the Persian ZBI-12.A Pearson`s correlation coefficient was calculated for validity testing.In order to assess reliability of the Persian ZBI-12, we administered the ZBI-12 randomly in 48 caregiver spouses again 3 days later. Results:  Generally, the internal consistency of the questionnaire was found to be strong (Cronbach’s alpha 0.77. Intercorrelationmatrix between the different domains of ZBI-12 at test-retest was 0.78. The results revealed that majority of questions the Persian ZBI_12 have a significant correlation to each other. In terms of validity, our results showed that there is significant correlations between some domains of the Persian version the Short Form Health Survey -36 with the Persian Zarit Burden Interview such as Q1 with Role Physical (P=0.03,General Health (P=0.034,Social Functional (0.037, Mental Health (0.023 and Q3 with Physical Function (P=0.001,Viltality (0.002, Socil Function (0.001.  Conclusions:  Our findings suggest that the Zarit Burden Interview Persian version is both a valid and reliable instrument for measuring the burden of caregivers of individuals with chronic spinal cord injury.

Caregiver's Burden, Coping, and Psycho-Education in Indian Households with Single- and Multiple-Affected Members with Schizophrenia.

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Chakraborty, Satabdi; Bhatia, Triptish; Anderson, Carol; Nimgaonkar, Vishwajit L; Deshpande, Smita N

2013-01-01

There is considerable evidence that family psycho-education combined with pharmacological intervention for patients with schizophrenia increases family understanding of the illness, reduces the familial burden of care, and improves patient outcomes. However, no studies have determined whether the burden of care is greater for those families with more than one ill member (multiplex) than for families with a single-affected individual (simplex), and whether psycho-educational programs should be adapted to meet the specific needs of multiplex families. This study was conducted at a tertiary care postgraduate teaching hospital in New Delhi, India. Caregivers in simplex [n = 50] and multiplex families [n = 30] were compared with regard to levels of burden, coping, and the impact of psycho-education on family functioning. All the caregiver participants attended eight bimonthly, psycho-educational intervention sessions. They were assessed on the Burden Assessment Schedule (BAS) and the Coping Check List (CCL) before and after psycho-education. Caregivers from the multiplex families reported significantly more burden on two domains of the BAS, but there were no significant differences between the groups with regard to coping on the CCL. Following psycho-education, significant improvement occurred in the majority of domains of the BAS and the CCL; the effect sizes varied by domain and family type. Multiplex families face a greater burden of care compared with simplex families. Currently, available psycho-education programs are moderately effective for such families.

The relationship between family functioning and caregiving appraisal of dementia family caregivers: caregiving self-efficacy as a mediator.

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Liu, Hsin-Yi; Huang, Lian-Hua

2018-04-01

The aim of this study was to explore caregiving self-efficacy as a mediator for the association between family functioning and caregiving appraisal of dementia family caregivers in Taiwan. This study adopted a cross-sectional correlational design. Purposive sampling was used to recruit 115 dyads of dementia patients and family caregivers from the outpatient neurological clinics of two hospitals in northern Taiwan. Data were gathered through interviews with a structured questionnaire, which included demographic characteristics for caregivers and patients, family functioning, caregiving self-efficacy, as well as positive and negative aspects of caregiving appraisal. Family functioning, patients' activities of daily living score, Neuropsychiatric Inventory caregiver distress, and three domains of self-efficacy were significantly associated with caregiver burden. Hierarchical multiple regression analyses indicated that self-efficacy for obtaining respite (SE-OR) significantly explained 20.5% of the variance in caregiver esteem. Caregiver perceived worsened health status, family functioning, and SE-OR significantly explained 59% of the variance in caregiver burden. The mediation test only supported the partially mediating role of SE-OR on the relationship between family functioning and caregiver burden, while the mediating effect of self-efficacy for responding to disruptive behaviours and controlling upsetting thoughts were insignificant. Our findings provided preliminary evidence for health professionals recommending that future studies should assess the family dynamic and health problems of caregivers, and develop appropriate family-centred interventions that focus on strengthening interfamily support and respite services to alleviate caregiver burden.

How impulsivity relates to compulsive buying and the burden perceived by caregivers after moderate-to-severe traumatic brain injury.

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Rochat, Lucien; Beni, Catia; Billieux, Joël; Annoni, Jean-Marie; Van der Linden, Martial

2011-01-01

Impulsivity is a core feature in patients with traumatic brain injury (TBI). The aim of the study is to investigate how a specific dimension of impulsivity, namely urgency (the tendency to act rashly when distressed), might shed new light on the aetiology of compulsive buying proneness in patients with TBI and to explore how urgency and compulsive buying relate to the burden perceived by the caregivers. Caregivers of 74 patients with TBI were given 3 questionnaires in order to assess their subjective burden as well as patients' impulsivity and compulsive buying proneness. Both urgency and compulsive buying tendencies significantly increased after TBI. Furthermore, path analyses revealed that current urgency was both directly and indirectly related to the subjective burden perceived by the caregivers, and this indirect pathway was mediated by compulsive buying. Urgency plays a central role in understanding specific problematic behaviours after TBI and their impact on caregivers. These findings are discussed in light of the cognitive processes underlying the urgency component of impulsivity in relation to the occurrence of compulsive buying behaviours after TBI. Copyright © 2011 S. Karger AG, Basel.

Effects of leisure activities at home on perceived care burden and the endocrine system of caregivers of dementia patients: a randomized controlled study.

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Hirano, Akemi; Umegaki, Hiroyuki; Suzuki, Yusuke; Hayashi, Toshio; Kuzuya, Masafumi

2016-02-01

Psychological stress associated with caregiving is thought to underlie the high incidence of hypertension, ischemic heart disease, and mortality, as well as reduced immune function, among caregivers of dementia patients. Here, we examined the effects of periodic leisure activities performed by caregivers of dementia patients with care recipients at home on perceived care burden and levels of stress hormones. Participants were 42 caregivers aged ≥ 65 years of patients diagnosed with Alzheimer's dementia. They were randomly assigned to intervention and non-intervention groups. The intervention group underwent a leisure activity program (30 min/3 times/week for 24 weeks) with the care recipient, and the control group underwent normal care activities. The Zarit Burden Interview (ZBI) score, a subjective indicator of care burden, significantly decreased after intervention in the intervention group (p leisure activity on the neuroendocrine system. Our findings suggest that periodic leisure activities can reduce perceived care burden among caregivers of dementia patients. However, in order to evaluate accurately the effects of leisure activities of the present study, long-term follow-up of both caregivers and care recipients is necessary. The Nagoya University Department of Medicine Ethics Committee Clinical Trials Registry Number is 1290.

Similarities amid the difference: caregiving burden and adaptation outcomes in dyads of parents and their children with and without cerebral palsy.

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Carona, C; Crespo, C; Canavarro, M C

2013-03-01

This study had two main objectives: first, to examine the direct and indirect effects, via social support, of caregiving burden on the adaptation outcomes of children/adolescents with cerebral palsy and their parents; and second, to assess the invariance of such models in clinical vs. healthy subsamples. Participants were 210 dyads of children/adolescents and one of their parents (total N=420), divided in 93 dyads of children/adolescents with cerebral palsy and 117 dyads of children/adolescents with no medical diagnosis. Data on caregiving burden, social support and adaptation outcomes were obtained through self-report questionnaires. Caregiving burden was linked to parents and their children's psychological maladjustment and quality of life both directly (except for children's quality of life) and indirectly through social support. Findings were invariant across clinical and healthy subsamples. Caregiving burden may influence adaptation outcomes of children/adolescents with CP and their parents both directly and via their social support perceptions. These patterns are similar to those observed in typically developing children/adolescents. Copyright © 2012 Elsevier Ltd. All rights reserved.

The relationships among Muslim Uyghur and Kazakh disabled elders' life satisfaction, activity of daily living, and informal family caregiver's burden, depression, and life satisfaction in far western China: A structural equation model.

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Wang, Wen Ting; He, Bin; Wang, Yu Huan; Wang, Mei Yan; Chen, Xue Feng; Wu, Fu Chen; Yang, Xue

2017-04-01

1 Hypothesis Disabled elders' activities of daily living, caregiver burden, caregiver depression, and caregivers' life satisfaction are significantly related to the life satisfaction of elderly people with disability. 2 Hypothesis There are direct and indirect effects between the life satisfaction of elders, disabled elders' activities of daily living, and family caregivers' factors. This study explored the interrelationships of disabled elders' life satisfaction and activities of daily living, caregivers' factors (burden, depression, and life satisfaction) through a structural equation model. In total, 621 dyads of disabled elders and informal family caregivers completed questionnaires during face-to-face interviews in Xinjiang Uyghur Autonomous Region from September 2013 to January 2014. Activity of daily living exerted a direct effect on life satisfaction of disabled elders and 30.4% indirect effect through caregivers' factors. Caregiver burden had a 60.0% direct effect on life satisfaction of disabled elders and a 40.0% indirect effect through the caregiver depression. Caregiver depression showed 76% direct effect on life satisfaction of disabled elders and 24% indirect effect through caregivers' life satisfaction. Direct relationships between activity of daily living and caregiver burden, caregiver burden and caregiver depression, and caregiver depression and caregivers' life satisfaction were observed. Activity of daily living had a 91.3% indirect effect on caregiver depression mediated by caregiver burden; caregiver burden had a 40.0% indirect effect on caregivers' life satisfaction mediated by caregiver depression. Results provide useful information for nurses and policymakers and shed light on the need to consider caregivers' factors in improving care recipients' life satisfaction. © 2017 John Wiley & Sons Australia, Ltd.

The effectiveness of the nursing intervention program on feeling of burden and coping among caregivers of children with epilepsy

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Maaly El-malky; Magda Mohsen; Hemat Amer

2016-01-01

Epilepsy is one of the most common pediatric neurological disorders, which have negative psychological, emotional, and physical consequences of providing care. Nursing intervention is a key element of managing these patients and their families in order to reduce feelings of burden and enhancing coping among caregivers. Aim: To evaluate the effectiveness of nursing intervention on a feeling of burden and coping among caregivers of children with epilepsy. Design: A quasi-experimental design (on...

Effect of a psycho-educational intervention for family members on caregiver burdens and psychiatric symptoms in patients with schizophrenia in Shiraz, Iran

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2012-01-01

Background This study explored the effectiveness of family psycho-education in reducing patients’ symptoms and on family caregiver burden. Methods Seventy Iranian outpatients with a diagnosis of schizophrenia disorder and their caregivers were randomly allocated to the experimental (n = 35) or control groups (n = 35). Patients in the experimental group received antipsychotic drug treatment and a psycho-educational program was arranged for their caregivers. The psycho-educational program consisted of ten 90-min sessions held during five weeks (two session in each week). Each caregiver attended 10 sessions (in five weeks) At baseline, immediately after intervention, and one month later. Validated tools were used to assess patients’ clinical status and caregiver burden. Results Compared with the control group, the case group showed significantly reduced symptom severity and caregiver burden both immediately after intervention and one month later. Conclusions These results suggest that even need based short-term psycho-educational intervention for family members of Iranian patients with schizophrenic disorder may improve the outcomes of patients and their families. Trial registration IRCT Number:138809122812 N1` PMID:22632135

Compassionate Love in Individuals With Alzheimer's Disease and Their Spousal Caregivers: Associations With Caregivers' Psychological Health.

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Monin, Joan K; Schulz, Richard; Feeney, Brooke C

2015-12-01

To examine whether compassionate love in both individuals with Alzheimer's disease (AD) and their spousal caregivers related to less caregiving burden, more positive caregiving appraisals, and less depressive symptoms for caregivers. Fifty-eight individuals with AD and their spousal caregivers participated in interviews in which both partners reported their compassionate love for their partner, and caregivers self-reported burden, positive appraisals of caregiving, and depressive symptoms. As hypothesized, both AD individuals' and caregivers' compassionate love were associated with less burden and more positive appraisals of caregiving. Also, care givers' compassionate love mediated the association between AD individuals' compassionate love and caregivers' burden as well as the association between AD individuals' compassionate love and caregivers' positive appraisals of caregiving. Finally, there was a marginally significant association between caregivers' compassionate love and less caregiver depressive symptoms. Results suggest that AD individuals' compassionate love is related to compassionate love in caregivers, which in turn relates to reduced burden but not significantly less depressive symptoms for caregivers. Assessing caregivers' and AD individuals' feelings of compassionate love may be useful in identifying caregivers who are resilient and those who are at a heightened risk for caregiving burden. Also, interventions that enhance both partners' compassionate love may benefit caregivers. © The Author 2014. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

Factors affecting burden on caregivers of stroke survivors: Population-based study in Mumbai (India

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Madhumita Bhattacharjee

2012-01-01

Full Text Available Background: Caring for stroke patients leads to caregiver (CG strain. The aims of this study are to identify factors related to increased CG burden in stroke survivors in a census-defined population and to assess the relationship between patient characteristics and CG stress. Materials and Methods: In a prospective population-based study, 223 first ever stroke (FES were identified over a 1-year period. At 28 days, 127 (56.9% were alive and 79 (35% died, and 17 were lost to follow-up. One hundred and eleven CGs of 127 FES survivors agreed to participate. The level of stress was assessed by two scales: Oberst Caregiving Burden Scale (OCBS and the Caregivers Strain Index (CSI in CGs of survivors with mild stroke Modified Rankin Scale (MRS 1-2 and in those with significant disability (MRS 3-5. Results: The mean age of CGs was 45.6 years, approximately 22 years younger than that of the patients (67.5 years. Eighty-nine (80% of the CGs were females and only 22 (20% were males. Urinary incontinence (P=0.000008, morbidity at 28 days by MRS (P=0.0051, female gender (P=0.0183 and moderate to severe neurological deficit by National Institute of Health Stroke Scale (NIHSS on admission (P=0.0254 were factors in FES cases leading to major CGs stress. CG factors responsible for major stress were long caregiving hours (P≤0.000001, anxiety (P≤0.000001, disturbed night sleep ( P≤0.000001, financial stress (P=0.0000108, younger age (P=0.0021 and CGs being daughter-in-laws (P=0.012. Conclusion: Similar studies using uniform methodologies would help to identify factors responsible for major CG stress. Integrated stroke rehabilitation services should address CG issues to local situations and include practical training in simple nursing skills and counseling sessions to help reduce CG burden.

Validating a Cantonese short version of the Zarit Burden Interview (CZBI-Short) for dementia caregivers.

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Tang, Jennifer Yee-Man; Ho, Andy Hau-Yan; Luo, Hao; Wong, Gloria Hoi-Yan; Lau, Bobo Hi-Po; Lum, Terry Yat-Sang; Cheung, Karen Siu-Lan

2016-09-01

The present study aimed to develop and validate a Cantonese short version of the Zarit Burden Interview (CZBI-Short) for Hong Kong Chinese dementia caregivers. The 12-item Zarit Burden Interview (ZBI) was translated into spoken Cantonese and back-translated by two bilingual research assistants and face validated by a panel of experts. Five hundred Chinese dementia caregivers showing signs of stress reported their burden using the translated ZBI and rated their depressive symptoms, overall health, and care recipients' physical functioning and behavioral problems. The factor structure of the translated scale was identified using principal component analysis and confirmatory factor analysis; internal consistency and item-total correlations were assessed; and concurrent validity was tested by correlating the ZBI with depressive symptoms, self-rated health, and care recipients' physical functioning and behavioral problems. The principal component analysis resulted in 11 items loading on a three-factor model comprised role strain, self-criticism, and negative emotion, which accounted for 59% of the variance. The confirmatory factor analysis supported the three-factor model (CZBI-Short) that explained 61% of the total variance. Cronbach's alpha (0.84) and item-total correlations (rho = 0.39-0.71) indicated CZBI-Short had good reliability. CZBI-Short showed correlations with depressive symptoms (r = 0.50), self-rated health (r = -0.26) and care recipients' physical functioning (r = 0.18-0.26) and disruptive behaviors (r = 0.36). The 12-item CZBI-Short is a concise, reliable, and valid instrument to assess burden in Chinese dementia caregivers in clinical and social care settings.

Costs and Burden Associated with Loss of Labor Productivity in Informal Caregivers of People with Dementia: Results from Spain.

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Farré, Marta; Kostov, Belchin; Haro, Josep Maria; Cabrera, Esther; Risco, Ester; Alvira, MCarmen; Miguel, Susana; Zabalegui, Adelaida

2017-11-13

We analyzed indirect costs related to loss of labor productivity (LLP) in informal caregivers (ICs) of people with dementia (PwD) and the associated caregiver burden and patients' clinical variables. Multicenter cohort study of PwD and their ICs (n = 287) focused on two groups: (1) home care and (2) institutional long-term care. The costs of LLP were assessed using the Resource Utilization Dementia instrument and a human capital approach. The cost for LLP was 378&OV0556;/month or 4.536&OV0556;/year. Greater disease severity increased the likelihood of reducing working hours and missing a working day. There was a significant association between partial absenteeism and burden in employed informal caregiver in both the home and institutional setting. Cognitive impairment contributes to the cost of LLP in IC especially in home-care. LLP has a negative impact on IC burden.

Relationship of family caregiver burden with quality of care and psychopathology in a sample of Arab subjects with schizophrenia

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Zahid Muhammad A

2010-09-01

Full Text Available Abstract Background Although the burden experienced by families of people with schizophrenia has long been recognized as one of the most important consequences of the disorder, there are no reports from the Arab world. Following the example of the five - nation European (EPSILON study, we explored the following research question: How does the relationship between domains of caregiving (as in the Involvement Evaluation Questionnaire - IEQ-EU and caregiver psychic distress on the one hand, and caregiver's/patient's socio-demographics, clinical features and indices of quality of care, on the other hand, compare with the pattern in the literature? Method Consecutive family caregivers of outpatients with schizophrenia were interviewed with the IEQ-EU. Patients were interviewed with measures of needs for care, service satisfaction, quality of life (QOL and psychopathology. Results There were 121 caregivers (66.1% men, aged 39.8. The IEQ domain scores (total: 46.9; tension: 13.4; supervision: 7.9; worrying: 12.9; and urging: 16.4 were in the middle of the range for the EU data. In regression analyses, higher burden subscale scores were variously associated with caregiver lower level of education, patient's female gender and younger age, as well as patient's lower subjective QOL and needs for hospital care, and not involving the patient in outdoor activities. Disruptive behavior was the greatest determinant of global rating of burden. Conclusion Our results indicate that, despite differences in service set-up and culture, the IEQ-EU can be used in Kuwait as it has been used in the western world, to describe the pattern of scores on the dimensions of caregiving. Differences with the international data reflect peculiarities of culture and type of service. Despite generous national social welfare provisions, experience of burden was the norm and was significantly associated with patient's disruptive behavior. The results underscore the need for provision

Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews.

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Weisser, Fabia B; Bristowe, Katherine; Jackson, Diana

2015-09-01

Family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, an incurable, mostly rapidly fatal neurodegenerative disease, face many challenges. Although there is considerable research on caregiver burden in Motor Neurone Disease/Amyotrophic Lateral Sclerosis, there is less knowledge of the positive aspects of caring. To explore the experiences of family caregivers of people with Motor Neurone Disease/Amyotrophic Lateral Sclerosis, specifically the relationship between positive and negative experiences of caring, and to identify possible ways to better support these caregivers. Secondary thematic analysis of 24 semi-structured qualitative interviews conducted longitudinally with 10 family caregivers. Interviews explored rewarding and unrewarding aspects of caring. Themes emerged around burden, needs, rewards and resilience. Resilience included getting active, retaining perspective and living for the moment. Burden was multifaceted, including social burden, responsibility, advocacy, ambivalence, guilt and struggling with acceptance. Rewards included being helped and 'ticking along'. Needs were multifaceted, including social, practical and psychological needs. The four main themes were interrelated. A model of coping was developed, integrating resilience (active/positive), burden (active/negative), needs (passive/negative) and reward (passive/positive). Burden, resilience, needs and rewards are interrelated. Caregivers' ability to cope with caring for a person with Motor Neurone Disease/Amyotrophic Lateral Sclerosis oscillates between positive and negative aspects of caring, being at times active, at times passive. Coping is a non-linear process, oscillating between different states of mind. The proposed model could enable clinicians to better understand the caregiver experience, help family caregivers foster resilience and identify rewards, and develop appropriate individualised caregiver support plans. © The Author(s) 2015.

Gender Differences in Dementia Spousal Caregiving

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Minna Maria Pöysti

2012-01-01

Full Text Available The proportion of male caregivers is rapidly increasing. However, there are few large scale studies exploring gender differences in the burden or coping with caregiving. We investigated this among caregivers of patients with dementia. The study cohort consisted of 335 dyads of wife-husband couples from two studies including dementia patients and their spousal caregivers. Baseline mini-mental state examination (MMSE, clinical dementia rating scale (CDR, neuropsychiatric inventory (NPI, cornell depression scale and charlson comorbidity index (CCI were used to describe patients with dementia, Zarit burden scale and geriatric depression scale were used to measure experienced burden and depression of caregivers. Mean age of caregivers was 78 years. There were no differences in depression, satisfaction with life, or loneliness according to caregivers' gender. Male caregivers had more comorbidities than females (CCI 1.9 versus 1.1, P<0.001, and the wives of male caregivers had a more severe stage of dementia than husbands of female caregivers (CDR, P=0.048; MMSE14.0 versus 17.7, P<0.001. However, the mean Zarit burden scale was significantly lower among male than female caregivers (31.5 versus 37.5; P<0.001. Lower education of male caregivers tended to be associated with less experienced burden. In conclusion, male caregivers of dementia experienced lower burden than female caregivers despite care recipients' more severe disease.

Review: a conceptual model of perceived burden of informal caregivers for older persons with a severe functional psychiatric syndrome and concomitant problematic behaviour.

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Zegwaard, Marian I; Aartsen, Marja J; Cuijpers, Pim; Grypdonck, Mieke Hf

2011-08-01

This literature review aims to delineate the determinants of perceived burden by informal caregivers and provide insight into the interrelatedness between these determinants. Despite the attention given to the various determinants of perceived burden, their interrelatedness has not been unravelled. Insight into this interrelatedness is mandatory for the development of successful, complex, multivariate interventions to reduce perceived burden of informal caregivers. DESIGN; Systematic review. Four electronic databases, CINAHL, Embase psychiatry, Medline, Psychinfo and reference lists of selected articles, were searched. Publications between January 1985-2008 were included if they concerned mental illness, burden and care giving. Articles were selected according to predefined inclusion and exclusion criteria. The results of mostly descriptive, cross-sectional and univariate research and the more process-oriented results coming from qualitative burden research are organised in a process orientated conceptual scheme or model adapted from the stress-theoretical framework by Lazarus and Folkman. The model indicates that perceived burden must be understood through the individual appraisal of stressors and the availability and use of internal and external resources. Perceived burden is the outcome of multiple, clinically overlapping psychiatric problems, problematic behaviour and functional disabilities. So far, intervention programs to reduce perceived burden of informal caregivers have not devoted much attention to the interrelatedness of the origins of burden. The conceptual model provides an overview of the various determinants of perceived burden and a clear picture of the possible interrelatedness appears. This overview of the most important sources of burden helps to develop a complex, multivariate intervention that is comprehensive, long-term, individually tailored and has the flexibility to meet the dynamics of burden over time. Use of the conceptual model is

Acculturation level and caregiver outcomes from a randomized intervention trial to enhance caregivers' health: evidence from REACH II.

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Meyer, Oanh L; Liu, Xiaoyan Lucia; Tancredi, Daniel; Ramirez, A Susana; Schulz, Richard; Hinton, Ladson

2018-06-01

Latinos comprise a growing segment of the caregiver population and vary widely in acculturation, yet little is known regarding how acculturation might affect caregiver stress or intervention outcomes. This study examined the relationship between acculturation and burden, bother, and depression in Latino dementia caregivers at baseline and following an intervention. This was a secondary data analysis of 211 Latino caregivers of older adults with dementia from Resources for Enhancing Alzheimer's Caregiver Health (REACH) II, a multisite randomized trial of caregiver interventions. Baseline and follow-up data were used to run mixed-effects models examining the main and moderating effect of acculturation on caregiver stress. No significant main effect of acculturation was found for any of the outcome measures, controlling for demographic covariates. Acculturation moderated the effect of the intervention on caregiver burden: those who were more acculturated benefited more from the intervention. Differential acculturation for Latino caregivers was not directly associated with caregiver burden, bother, or depression, but was associated with reducing burden from the intervention. Future research should explore by what mechanism acculturation influences caregiver burden following an intervention.

Zarit Burden Interview Psychometric Indicators Applied in Older People Caregivers of Other Elderly.

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Bianchi, Mariana; Flesch, Leticia Decimo; Alves, Erika Valeska da Costa; Batistoni, Samila Sathler Taveres; Neri, Anita Liberalesso

2016-11-28

to derive psychometric indicators of construct validity and internal consistence of the Zarit Burden Interview scale for caregivers, describing associations of the scale with metrics related to care demands, coping strategies and depression in aged caregivers. crosscutting descriptive and correlational study. The convenience sample was composed by a hundred and twenty one senior caregivers (Avg=70.5 ± 7.2 years, 73% women). They answered a questionnaire to check the physical and cognitive demands of care, the Zarit Burden Interview (ZBI), the California Inventory of Coping Strategies and the Geriatric Depression Scale (GDS-15). ZBI showed good internal consistency and also for the three factors emerging from factor analysis, explaining 44% of variability. ZBI is positively related with objective care demands (p Inventario de Estrategias de Enfrentamiento de California y la Escala de Depresión Geriátrica (GDS-15). la ZBI reveló buenos índices de consistencia interna para los tres factores resultantes del análisis factorial que explicaron 44% de la variabilidad. La ZBI se correlacionó positivamente con demandas de cuidado específicas (p < 0,001): depresión (p = 0,006) y uso de estrategias de enfrentamiento disfuncionales (p = 0,0007). la ZBI se revela interesante para explicar los cuidadores ancianos y las asociaciones entre altos grados de sobrecarga, enfrentamiento disfuncional y depresión; los resultados apuntan un escenario peculiar de vulnerabilidad a la que éste anciano, que cuida de otro anciano, puede estar expuesto.

The effect of a supportive educational program based on COPE model on caring burden and quality of life in family caregivers of women with breast cancer.

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Bahrami, Masoud; Farzi, Saba

2014-03-01

The family caregivers of the people with cancer such as breast cancer experience a decrease in their quality of life and an increase of their caring burden. In most of the cases, the researchers consider the quality of life and physical and psychological problems in patients with cancer and pay less attention to the family caregivers. To reduce the caring burden imposed to the caregivers and improve their quality of life, supportive strategies such as problem solving can be used. These interventions may have benefits for the caregivers although the research results are contradictory. The aim of this research was to determine the effect of a supportive educational program, based on COPE model, which focuses on creativity, optimism, planning, and expert information on individuals, on the caring burden and quality of life in the family caregivers of women with breast cancer. The present study is a clinical trial, which was conducted in Seyed-Al-Shohada Hospital of Isfahan University of Medical Sciences and a private center of chemotherapy in 2012. In this study, researchers investigated the effect of a supportive educational program based on COPE model on the caring burden and quality of life in the family caregivers of women with breast cancer. This supportive educational program included two hospital visits and two telephone sessions based on COPE model for 9 days. A total of 64 patients were selected based on the inclusion criteria and randomly assigned into two groups. Data were collected by use of Caregiver Quality of Life Index-Cancer (CQOL-C), World Health Organization Quality of Life - Bref(WHOQOL-Bref)_, and Zarit caring burden at the beginning of the intervention and a month after the intervention. The results showed that in the experimental group, the mean score of physical, mental, spiritual, environmental domains and overall quality of life in the family caregivers was significantly increased compared to the control group, but there was no change in the

The cortisol awakening response in caregivers of schizophrenic offspring shows sensitivity to patient status.

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Gonzalez-Bono, Esperanza; De Andres-Garcia, Sara; Moya-Albiol, Luis

2011-01-01

Taking care of offspring during a prolonged period of time is probably one of the most stressful life experiences for parents. The present study compares the cortisol awakening response (CAR) in 38 long-term caregivers (mothers and fathers of schizophrenic relatives) with a control group of 32 non-caregivers. Factors such as general stress, caregiver burden, patient severity, and institutionalization were studied. Although a blunted CAR was observed in caregivers in comparison with controls, this difference was not significant. Among caregivers, the absence of institutionalization for the patient is associated with a lack of CAR in caregivers in comparison with caregivers of institutionally supported patients. General stress, caregiver burden, and patient severity themselves did not favor significant changes in CAR. CAR shows greater sensitivity to institutional support than patient severity and perceived stress. Further research is needed to explain the impact of these factors on health and the psychological factors involved.

[The family of a patient with borderline personality disorder: burden of illness and interventions for caregivers].

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Martino, Francesca; Lia, Loredana; Bortolotti, Biancamaria; Menchetti, Marco; Monari, Marco; Ridolfi, Maria Elena; Sanza, Michele; Sasdelli, Anna; Berardi, Domenico

2014-01-01

The scientific literature focused on factors involved in the onset of borderline personality disorder (BPD) has given a central role to the families of these patients. The role of the family in understanding the disorder has gradually changed thanks to research that investigated the interaction of several factors in the development of this psychopathology. Recently, scientific literature on DBP has allowed to consider parents as no longer "responsible" for the development of the disorder, but as directly involved in interpersonal problems of patients and therefore a potential "ally" in the management of crisis. The aim of this study is to describe and quantify the family burden of BPD patients and browse specific interventions for the family of these patients. PubMed and PsycINFO have been used for review with the following keywords: "borderline personality disorder", "family", "psychopathology", "burden", "psychoeducation", "caregiver", "caretaker". Studies on family burden of BPD patients are still few. Research shows that the family burden of BPD patients is comparable with that of families of patients with schizophrenia. Clinical trials of interventions for caregivers of patients with BPD show that specific strategies can reduce the family burden and improve their self-efficacy. Scientific literature highlights the relevance of problems of families with a BPD member and the importance of involving them in the treatment of these patients.

The Northern Manhattan Caregiver Intervention Project: a randomised trial testing the effectiveness of a dementia caregiver intervention in Hispanics in New York City.

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Luchsinger, José; Mittelman, Mary; Mejia, Miriam; Silver, Stephanie; Lucero, Robert J; Ramirez, Mildred; Kong, Jian; Teresi, Jeanne A

2012-01-01

Dementia prevalence and its burden on families are increasing. Caregivers of persons with dementia have more depression and stress than the general population. Several interventions have proven efficacy in decreasing depression and stress in selected populations of caregivers. Hispanics in New York City tend to have a higher burden of dementia caregiving compared to non-Hispanic whites (NHW) because Hispanics have a higher prevalence of dementia, tend to have high family involvement, and tend to have higher psychosocial and economic stressors. Thus, we chose to test the effectiveness of a dementia caregiving intervention, the New York University Caregiver Intervention (NYUCI), with demonstrated efficacy in spouse caregivers in Hispanic relative caregivers of persons with dementia. Including the community health worker (CHW) intervention in both arms alleviates general psychosocial stressors and allows the assessment of the effectiveness of the intervention. Compared to two original efficacy studies of the NYUCI, which included only spouse caregivers, our study includes all relative caregivers, including common law spouses, children, siblings, a nephew and nieces. This study will be the first randomised trial to test the effectiveness of the NYUCI in Hispanic caregivers including non-spouses. The design of the study is a randomised controlled trial (RCT). Participants are randomised to two arms: case management by a CHW and an intervention arm including the NYUCI in addition to case management by the CHW. The duration of intervention is 6 months. The main outcomes in the trial are changes in the Geriatric Depression Scale (GDS) and the Zarit Caregiver Burden Scale (ZCBS) from baseline to 6 months. This trial is approved by the Columbia University Medical Center Institutional Review Board (AAAI0022), and funded by the National Institute on Minority Health and Health Disparities. The funding agency has no role in dissemination.  www.ClinicalTrials.gov NCT01306695.

[Validation of the abbreviated Zarit scales for measuring burden syndrome in the primary caregiver of an elderly patient].

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Vélez Lopera, Johana María; Berbesí Fernández, Dedsy; Cardona Arango, Doris; Segura Cardona, Angela; Ordóñez Molina, Jaime

2012-07-01

To determine which abbreviated Zarit Scale (ZS) better evaluates the burden of the caregiver of an elderly patient in Medellin, Colombia. Validation study. Primary Care setting in the city of Medellin. Primary caregiver of dependent elderly patients over 65 years old. Sensitivity, specificity, positive predictive value, and negative predictive value for the different abbreviated Zarit scales, plus performing a reliability analysis using the Cronbach Alpha coefficient. The abbreviated scales obtained a sensitivity of between 36.84 and 81.58%, specificity between 95.99 and 100%, positive predictive values between 71.05 and 100%, and negative predictive values of between 91.64 and 97.42%. The scale that better determined caregiver burden in Primary Care was the Bedard Screening scale, with a sensitivity of 81.58%, a specificity of 96.35% and positive and negative predictive values of 75.61% and 97.42%, respectively. Copyright © 2010 Elsevier España, S.L. All rights reserved.

The impact and financial burden of pulmonary arterial hypertension on patients and caregivers: results from a national survey.

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Zhai, Zhenguo; Zhou, Xia; Zhang, Shuai; Xie, Wanmu; Wan, Jun; Kuang, Tuguang; Yang, Yuanhua; Huang, Huan; Wang, Chen

2017-09-01

Pulmonary arterial hypertension (PAH) is a chronic progressive devastating disease. Symptom burden might impair health-related quality of life of patients. Furthermore, treatment on this disease brings significant financial burden to patients' families. Both physiological and psychological symptoms have been reported, but limited evidence regarding the impact of PAH on patients and caregivers exists, especially the emotional issues and their association with patients' health quality. The main purpose of this study was to describe the impact of PAH on patients and their caregivers in a Chinese population.This large-scale national survey enrolled 174 participants to complete questionnaires using face-to-face semistructured interviews.PAH influenced all aspects of patients' lives including daily activities, work, emotions, and personal relationships. Both patients and caregivers reported a major impact on family finances and on their work. The majority of patients had feelings of isolation. A lack of public understanding about PAH contributes to social isolation. Most patients and caregivers would like to get information regarding PAH doctors and patient organization contacts to obtain support.This survey-based report provides information regarding the way and extent to which PAH impacts both patients and their caregivers and provides some means for comparison with non-Chinese populations. It is important for physicians and the community to offer more support and information for PAH patients and their families.

Neuro-oncology family caregivers are at risk for systemic inflammation.

Science.gov (United States)

Sherwood, Paula R; Price, Thomas J; Weimer, Jason; Ren, Dianxu; Donovan, Heidi S; Given, Charles W; Given, Barbara A; Schulz, Richard; Prince, Jennifer; Bender, Catherine; Boele, Florien W; Marsland, Anna L

2016-05-01

Prolonged periods of family caregiving can induce stress levels that may negatively influence caregiver health. However, the physiologic effect of psychological distress in oncology family caregivers has received little attention. Therefore we aimed to determine longitudinal profiles of inflammatory cytokines (IL-6 and IL-1ra) in neuro-oncology caregivers and identify associations between psychological distress and cytokine levels. Depressive symptoms, anxiety, caregiver burden and blood were collected from 108 adult caregivers at adult patients' diagnosis, 4-, 8-, and 12-months. Trajectory analyses of log transformed cytokine levels were performed. Multiple logistic regression analyses evaluated the impact of psychological distress on cytokine levels. For both cytokines, two distinct populations were identified, neither of which changed over time. High IL-1ra was associated with male caregivers with anxiety (OR = 1.7; 95 %CI 1.06-2.83) and obese caregivers (BMI = 40) who felt burdened due to disrupted schedules (OR = 1.3; 95 %CI 1.02-1.77). Conversely, caregivers with a healthy weight (BMI = 25) who felt burdened due to disrupted schedules were less likely to have high IL-1ra (OR = 0.71; 95 %CI 0.54-0.92). Caregivers ≤30 years old with lower self-esteem from caregiving were 1.16 times (95 %CI 1.04-1.30) more likely to have high IL-6. Analysis demonstrated groups of family caregivers with high and low levels of systemic inflammation and these levels did not change longitudinally over the care trajectory. Poor physical health in family caregivers may have a negative impact on the burden placed on the healthcare system in general and on the well-being of neuro-oncology patients in particular.

Cross-cultural study of caregiver burden for Alzheimer's disease in Japan and Taiwan: result from Dementia Research in Kumamoto and Tainan (DeReKaT).

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Matsushita, Masateru; Pai, Ming-Chyi; Jhou, Cai-Ying; Koyama, Asuka; Ikeda, Manabu

2016-07-01

Caregiver burden (CB) of Alzheimer's disease (AD) in Taiwan is becoming an urgent social issue as well as that in Japan. The comparison of CB may explain how caregiver feels burden in each country. The participants were 343 outpatients with AD and their caregivers of Japan (n = 230) and Taiwan (n = 113). We assessed the CB using the Japanese and Chinese version of Zarit Caregiver Burden Interview (ZBI). The initial analysis was an exploratory factor analysis for each group to confirm the factor structure of ZBI. Then, the multiple-group structural equation modeling (MG-SEM) was used to assess the measurement invariance of ZBI such as configural, metric, and scalar invariances. Lastly, we compared the latent factor means of the ZBI between Japan and Taiwan. In both groups, the confirmatory factor analysis extracted 3 factors which were labeled "Impact on caregiver's life", "Embarrassed/anger", and "Dependency". The MG-SEM indicated an acceptable model fit, and established the partial scalar measurement invariance (comparative fit index (CFI) = 0.901, root mean square error of approximation (RMSEA) = 0.066). When we compared the latent factor means, the score of "Impact on caregiver's life" in Taiwanese caregivers was significantly higher than that in Japanese (p = 0.001). However, "Dependency" in Taiwanese caregivers was lower than that in Japanese (p Taiwan.

The relationship between caregiving self-efficacy and depressive symptoms in family caregivers of patients with Alzheimer disease: a longitudinal study.

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Grano, Caterina; Lucidi, Fabio; Violani, Cristiano

2017-07-01

Caregiving for a relative with dementia has been associated with negative consequences for mental health. Self-efficacy has been shown to correlate negatively with depression but the long-term association between caregiver burden, caregiver self-efficacy, and depressive symptoms, remains still largely unexplored. The aim of the present study was to evaluate whether different self-efficacy domains partially mediated the relationship between caregiving burden and depression. A three-wave design was used, with initial assessment and follow-ups three months later and one year later. One hundred seventy caregivers of patients with AD responded to measures of caregiver burden, caregiving self-efficacy, and depressive symptoms. Data were analyzed by means of structural equation models. The tested model provided support for the guiding hypothesis. Burden at the time of the first assessment (T1) significantly influenced depression one year later and the relationship between burden at time one and depressive symptoms one year later was partially mediated by self-efficacy for controlling upsetting thoughts. The findings of the present study provide evidence that, along a considerable length of time, the effects of caregiver burden on depressive symptoms can be explained by the caregivers' efficacy beliefs in controlling upsetting thoughts related to the caregiving tasks. Interventions for caregivers of patients with AD may help them in tackling negative thoughts about the caregiving role.

Leisure Time Activities and Mental Health in Informal Dementia Caregivers.

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Schüz, Benjamin; Czerniawski, Alana; Davie, Nicola; Miller, Lisa; Quinn, Michael G; King, Carolyn; Carr, Andrea; Elliott, Kate-Ellen J; Robinson, Andrew; Scott, Jenn L

2015-07-01

Dementia prevalence and the demand for dementia care are increasing. Informal caregiving accounts for a large proportion of dementia care, but can come at high cost for caregivers. Informal dementia caregivers are at higher risk for mental health problems than the general population. This study examines whether perceived change in leisure activities is one working mechanism linking stress and burden experience in dementia caregiving to lower mental health (depressive symptoms, anxiety symptoms, and reduced satisfaction with life), and whether there are group-based leisure activities that can buffer this detrimental effect. A total of 346 informal Australian dementia caregivers (88.15% female, age 18-82 years) participated in an online study. Mediation and moderation analyses using multiple regression demonstrated that perceived changes in leisure activities linked caregiving stress and burden to lower mental health, and that membership in groups engaging in affiliation or social activities attenuates negative effects of caregiving. Informal dementia caregivers benefit from satisfying leisure activities. In particular, engaging in social activities and self-help groups buffered the negative impact of caregiving. © 2015 The International Association of Applied Psychology.

Online Training and Support Programs Designed to Improve Mental Health and Reduce Burden Among Caregivers of People With Dementia: A Systematic Review.

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Egan, Kieren J; Pinto-Bruno, Ángel C; Bighelli, Irene; Berg-Weger, Marla; van Straten, Annemieke; Albanese, Emiliano; Pot, Anne-Margriet

2018-03-01

Dementia poses a considerable socioeconomic burden to society. On a global scale, family and other unpaid care predominates. Supporting caregivers is crucial, but scalable interventions are currently lacking. Because a growing number of studies have suggested that online training and support programs hold considerable promise for scaling up, we reviewed existing literature. We systematically searched 6 databases to identify studies of Internet-based interventions designed to train and support caregivers of people with dementia, and we formally assessed risk of bias. Our prespecified primary outcomes of interest included both mental health and caregiver burden/perceived stress. Our secondary outcomes of interest included knowledge, quality of life of caregivers, quality of care, caregiver response to challenging behaviors, coping, and self-efficacy. Eight randomized control trials met our inclusion criteria involving over 900 participants. The content and structure of Internet-based interventions, outcome measures, and duration differed markedly, and selection, performance, and reporting biases were varied and on occasion of concern. Six studies reported outcomes in caregivers' mental health outcomes, 3 studies reported burden outcomes. Three studies reported knowledge skills, quality of life and reaction to challenging behaviours, whereas 2 studies reported changes in coping outcomes and self-efficacy. No studies reported outcomes on quality of care. Although there is some evidence that Internet-based interventions can improve mental health outcomes for informal caregivers of people with dementia, marked methodological diversity across studies prevented the robust pooling of the results. A concerted and cohesive approach from all stakeholders is now required to help realize the full potential of this emerging field. Copyright © 2017. Published by Elsevier Inc.

The Impact of Intellectual Disability, Caregiver Burden, Family Functioning, Marital Quality, and Sense of Coherence

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Al-Krenawi, Alean; Graham, John R.; Al Gharaibeh, Fakir

2011-01-01

The present article is the first to consider the impact of intellectual disability on Bedouin-Arab families' caregiver burden, family functioning, marital quality, and sense of coherence. A random sample of 300 Bedouin-Arab parents with one or more intellectually disabled children, and a control group (n = 100) completed the McMaster Family…

Caregiver burden and need of support among family members of persons living with HIV : A qualitative study

OpenAIRE

Grafström, Anna; Petersson, Sofia

2012-01-01

Abstract Introduction: Vietnam has one of the fastest growing HIV- epidemics in the world. In Vietnam the primary caregivers are the family. Aim:  The aim was to examine caregiver burden and need of support among family members of persons living with HIV [PLHIV] in Ho Chi Minh City, and also to investigate the differences in these matters between genders. Method:  A descriptive cross-sectional study with quantitative method was used. The study was carried out at the Hospital of Tropical Disea...

Economic and psychological burden of scheduled surgery ...

African Journals Online (AJOL)

Background: Cancellation of scheduled surgery creates a financial burden for hospitals, caregivers and ..... costs and disregard some of the aspects mentioned in the ..... cancellation of elective surgical procedures in a Spanish general.

Cancer Communication and Family Caregiver Quality of Life

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Elaine Wittenberg

2017-03-01

Full Text Available Family caregivers have enormous communication responsibilities tied to caregiving, such as sharing the patient’s medical history with providers, relaying diagnosis and prognosis to other family members, and making decisions about care with the patient. While caregiver stress and burden has been widely documented in the caregiving literature, little is known about how communication burden, real or perceived communication challenges, impacts caregiver quality of life. In family caregiving, the City of Hope (COH Quality of Life model proposes that the caregiving experience is reciprocal to the patient experience, impacting physical, social, psychological, and spiritual quality of life. We used data from a pilot study testing a communication coaching call intervention with family caregivers of lung cancer patients to analyze caregiver reported communication burden and quality of life. We found variances in each quality of life domain, suggesting that caregiver interventions should range from self-care skill building for physical care to psycho-educational interventions that support caregiver coping and communication skill building. These findings demonstrate the importance of caregiver assessment and attention to communication burden in quality cancer care.

Mental Health in Rural Caregivers of Persons With Dementia

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Alexandra J. Werntz

2015-12-01

Full Text Available Informal caregiving for dementia is common and often affects caregiver mental health. In addition to typical stressors faced by caregivers of persons with dementia (PWDs, rural caregivers often face additional stressors associated with living in more remote locations; unfortunately, this group is largely understudied. Ninety-three caregiver–PWD dyads completed measures of social support, perceived control, self-efficacy, burden, and cognitive functioning. Measures of PWD activities of daily living and mental functioning were also collected. These variables were hypothesized to predict caregiver self-reported symptoms of depression, anxiety, and stress. Contrary to predictions, only caregiving-related self-efficacy and caregiver burden predicted the caregiver’s mental health. Future interventions for improving rural caregiver self-reported mental health should target cognitions associated with caregiving self-efficacy and caregiver burden. Health care providers for rural families should focus on ways to reduce feelings of caregiver burden and provide caregivers with useful skills and tools for caregiving.

Cancer Caregiver: Perceived Benefits of Technology.

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Lapid, Maria I; Atherton, Pamela J; Clark, Matthew M; Kung, Simon; Sloan, Jeff A; Rummans, Teresa A

2015-11-01

The burden associated with caregiving has been well documented. Caregivers have multiple responsibilities, and technology may be accessible as a potential burden-alleviating resource. We surveyed cancer caregivers regarding current technology use and willingness to use technology for easing burden or distress. Because age has been associated with technology use, responses were compared between geriatric (≥65 years old) and nongeriatric (18-64 years old) caregivers. We had 112 respondents. Based on nonmissing responses, 66% (n=71) were women, 95% (n=106) were white, and 84% (n=91) had post-high school education. Almost all caregivers reported having Internet (105 [94%]) and e-mail (102 [91%]) access. Nongeriatric caregivers indicated more willingness to access Internet-based tools that help caregivers (54 [93%] versus 41 [76%]; p=0.04) and were more frequent users of social media (37 [64%] versus 16 [30%]; p=0.01), smartphones (33 [57%] versus 16 [30%]; p=0.01), and other mobile wireless devices (42 [72%] versus 19 [35%]; p<0.001) than geriatric caregivers. They also more frequently expected technologies to improve their own quality of life (p=0.009), increase their feelings of being effective as a caregiver (p=0.02), and save time (p=0.003). Regardless of age, a majority of caregivers (67 [62%]) endorsed the potential benefit of caregiving technologies in preventing burnout. Most caregivers have high access to and use of technology. Geriatric and nongeriatric caregivers were receptive to technology-based tools to help with their caregiving roles. Although nongeriatric caregivers expected to derive more benefit from such tools, both groups believed that caregiving technologies could reduce burden.

Positive aspects of caregiving and its correlates in caregivers of schizophrenia: a study from north India.

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Kate, N; Grover, S; Kulhara, P; Nehra, R

2013-06-01

OBJECTIVE. To study the positive aspects of caregiving and its correlates in primary caregivers of patients with schizophrenia. METHODS. A total of 100 patients with schizophrenia and their primary caregivers were evaluated. Regarding the caregivers, their positive aspects of caregiving were assessed on the Scale for Positive Aspects of Caregiving Experience (SPACE). To examine the correlates of positive aspects of caregiving, they were also assessed on the Family Burden Interview (FBI) Schedule, the Involvement Evaluation Questionnaire (IEQ), coping checklist, the Social Support Questionnaire, the World Health Organization Quality of Life-BREF (Hindi version), the WHO Quality of Life-Spirituality, Religiousness and Personal Beliefs Scale, as well as the General Health Questionnaire-12. The patients were assessed on the Positive and Negative Syndrome Scale (PANSS) and the Global Assessment of Functioning Scale. RESULTS. On the SPACE, the highest mean score was seen in the domain of motivation for the caregiving role (2.7), followed by that of caregiver satisfaction (2.4) and caregiver gains (2.3). The mean score was least for the domain of self-esteem and social aspect of caring (1.9). The SPACE domain of caregiver satisfaction correlated negatively with many aspects of burden as assessed by FBI Schedule and coping as assessed by the coping checklist; whereas the self-esteem and social aspect of caring domain correlated positively with worrying-urging II domain and the total IEQ score. No significant correlations between the SPACE and socio-demographics as well as most of the clinical variables were noted. Motivation for the caregiving had a positive correlation with the PANSS negative symptom scale. Multiple correlations were found between the SPACE and quality of life, suggesting that higher positive caregiving experience was associated with better quality of life in caregivers. CONCLUSION. Caregivers of patients with schizophrenia do enjoy positive aspects of

Síndrome de sobrecarga y grado de funcionalidad familiar en cuidadores de personas con cáncer del hospital de niños Rafael Tobías Guevara de Barcelona, estado Anzoátegui, Venezuela | Caregiver burden syndrome and degree of family functionality in caregivers of people with cancer of children´s hospital Rafael Tobías Guevara in Barcelona, Anzoátegui state, Venezuela

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Ramón Marcano Caraballo

2017-11-01

Full Text Available When a family member assumes the role of caregiver, it is the family cohesion one of the key elements in the development of caregiver burden syndrome, being in turn the adaptive response of the family a factor that positively affects the course of the disease. Therefore, the objective of the study was to determine the presence of caregiver burden syndrome and its relation to the level of family functionality present in caregivers of patients with cancer at the oncology unit of Children's Hospital Rafael Tobias Guevara located in Barcelona, Anzoátegui state. The study was performed between February and April 2015, through a transversal and descriptive research. The data were collected through the Zarit Caregiver Burden Interview and family APGAR questionnaire. From the 23 cases evaluated, the female gender predominated among caregivers of cancer patients, the age group 18-30 years and caring times between 13-24 months. Regarding the level of caregiver burden syndrome in caregivers, 14 cases (60.86% showed it, represented by seven cases (30.43% with mild caregiver burden and seven cases (30.43% with intense caregiver burden. It was concluded that a greater degree of family functioning promoted a lower prevalence of caregiver burden syndrome. In addition, a direct relationship was shown between the time spent on patient care and the level of caregiver burden syndrome present in the caregiver.

Review: a conceptual model of perceived burden of informal caregivers for older persons with a severe functional psychiatric syndrome and concomitant problematic behaviour

NARCIS (Netherlands)

Zegwaard, M.I.; Aartsen, M.J.; Cuijpers, P.; Grypdonck, M.H.F.

2011-01-01

Aims and objectives. This literature review aims to delineate the determinants of perceived burden by informal caregivers and provide insight into the interrelatedness between these determinants. Background. Despite the attention given to the various determinants of perceived burden, their

Caregiving process and caregiver burden: Conceptual models to guide research and practice

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Brehaut Jamie

2004-01-01

Full Text Available Abstract Background Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered. Discussion Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks. Summary This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area.

Caregiving process and caregiver burden: Conceptual models to guide research and practice

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Raina, Parminder; O'Donnell, Maureen; Schwellnus, Heidi; Rosenbaum, Peter; King, Gillian; Brehaut, Jamie; Russell, Dianne; Swinton, Marilyn; King, Susanne; Wong, Micheline; Walter, Stephen D; Wood, Ellen

2004-01-01

Background Parental care for a child with a developmental disability is an enormous responsibility, one that can far exceed that of typical parental care. While most parents adapt well to the situation of caring for a child with a disability, some do not. To understand parents' adaptations to their children's disabilities, the complex nature of stress processes must be accounted for and the constructs and factors that play a role in the caregiving must be considered. Discussion Evidence suggests that there is considerable variation in how caregivers adapt to their caregiving demands. Many studies have sought to qualify the association between caregiving and health outcomes of the caregivers. Contextual factors such as SES, child factors such as child behaviour problems and severity of disability, intra-psychic factors such as mastery and self-esteem, coping strategies and social supports have all been associated with psychological and/or physical outcome or parents or primary caregivers. In reviewing these issues, the literature appears to be limited by the use of traditional analytic approaches which examine the relationship between a factor and an outcome. It is clear, however, that changes to single factors, as represented in these studies, occur very rarely even in the experimental context. The literature has also been limited by lack of reliance on specific theoretical frameworks. Summary This conceptual paper documents the state of current knowledge and explores the current theoretical frameworks that have been used to describe the caregiving process from two diverse fields, pediatrics and geriatrics. Integration of these models into one comprehensive model suitable for this population of children with disabilities and their caregivers is proposed. This model may guide future research in this area. PMID:14723791

Differences in impact of long term caregiving for mentally ill older adults on the daily life of informal caregivers: a qualitative study.

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Zegwaard, Marian I; Aartsen, Marja J; Grypdonck, Mieke Hf; Cuijpers, Pim

2013-03-27

Owing to the policy of extramuralization of care in most Western countries older people with severe mental illness have to rely more and more on informal caregivers for daily care. Caregivers themselves are often aged, and although caregiving implies an impact on daily life that exceeds the boundaries of usual informal care, the impact differs across caregivers. Some caregivers seem to suffer more than others, and the differences cannot be fully understood by factors currently known to exacerbate the burden of caregiving. In order to help caregivers reduce the impact of caregiving it is important to gain a deeper understanding of factors influencing the burden and its impact on the caregiver's life. With this in mind, the aim of the study is to explore and understand differences in the impact of long-term caregiving on the quality of life of caregivers who look after older adults with severe mental illness. A qualitative, associative, inductive strategy and continuous simultaneous coding were used to interpret the data of 19 semi-structured interviews. We identified an underlying psychological factor "perceived freedom of choice" which explains the gross differences in impact, leading to a definition of two main types of caregivers. Depending on how people perceive freedom of choice to provide care, the consequences of caregiving can be characterized as a process of gain (type 1) or loss (type 2). Four influential factors deepen the impact of caregiving for the type 2 caregivers, and two subtypes are identified for this category. Consequences of caregiving are most readily seen in a deteriorating quality of the relationship with the care recipient and in the psychosocial well-being of the caregiver. The concept of freedom of choice adds to our understanding of the differences and explains the variation in impact on the caregivers' life. The type 1 caregiver generally experiences gain whereas type 2 generally experiences loss, which puts the latter group typically

Adjustment Difficulties and Caregiving Burdens Faced by College Students with a Parent with Bipolar or Depressive Disorders

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Crandall, Erin K.; Ruggero, Camilo J.; Bain, Kathleen; Kilmer, Jared

2014-01-01

College campuses often host students who come from families where one or more parent has been affected by a bipolar or depressive disorder. The present study sought to determine whether these students face unique challenges in college, including increased adjustment difficulties as well as greater caregiving burden associated with their…

[Caregiving consequences in mental disorders--definitions and instruments of assessment].

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Ciałkowska-Kuźmińska, Magdalena; Kiejna, Andrzej

2010-01-01

Severe mental illnesses have far-reaching consequences for both patients and their relatives. This paper reviews literature on the measures of caregiving consequences. Authors provide a condensed knowledge and research results in the area of caregiving consequences, especially both subjective and objective caregivers' burden. The consequences of care apply to carers' social and leisure activities, financial status, health condition. The burden of care has three fundamental causes: the reorganisation of mental health services, a social isolation of patients and their families and the lack of systemic support for caregivers. The problem of caregiving consequences has been investigated in several studies. In order to identify factors, which have impact on caregiver distress, a variety instruments have been developed. This paper focuses on questionnaires useful for the systematic assessment of both objective and subjective burden: Involvement Evaluation Questionnaire (IEQ), Perceived Family Burden Scale (PFBS), Zarit Caregiver Burden Scale (ZCBS), Experience of Caregiving Inventory (ECI), Family Problems Questionnaire (FPQ). The mentioned instruments proved to be a reliable instrument for measuring caregiver consequences in mental healthcare.

Resilience in caregivers of persons with Alzheimer's disease: A human condition to overcome caregiver vulnerability

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Bernardino Fernández-Calvo

Full Text Available Abstract In general, the experience of providing assistance to and dealing with the complications experienced by a person with Alzheimer's disease puts caregivers in a situation of high risk, vulnerability, and stress, causing serious physical and emotional problems. However, some caregivers adopt a resilient mindset, which helps them to experience and express positive feelings as well as lower their burden in relation to the care. This positive experience occurs because caregivers perceive the process of caring as less adverse. They face the situation of care with a more positive mindset and are able to resist and maintain adaptive functioning. The objective of the present narrative literature review was to emphasize the need to develop intervention programs for caregivers based on salutogenic models of resilience, resistance, and personal growth to promote positive individual, family, and community resources.

Caregivers in schizophrenia: A cross Cultural Perspective.

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Talwar, Prashant; Matheiken, Shevonne Tresa

2010-01-01

Schizophrenia not only influences the lives of those affected but also those around them, especially the caregivers. This study examines the different determinants that are likely to contribute to the caregivers' perception of burden of care across different countries namely Malaysia and India, using the burden assessment schedule. The goals for this study were, to study the psychosocial and demographic aspects of patients suffering from schizophrenia, to study the levels of perceived burden of the Malaysian and Indian families caring for a relative with schizophrenia, and to study the determinants that contributes to the caregivers' perception of burden of care. The study was conducted in private hospitals, both in Malaysia as well as Mangalore after obtaining the necessary approval. 50 schizophrenia patients and their caregivers in Malaysia and India were chosen using the purposive sampling technique. The inclusion criteria were a minimum of 5 years since diagnosis of schizophrenia. Although the Indian caregivers perceived difficulties in several areas such as finance, family relationship, well-being and health, they still perceived burden to be lesser compared to Malaysian counterpart. Intensified community based care can reduce burden.

Caregiving for Dementia in Family Members: Caregiving Burden and Prospects for Effective Intervention.

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Maiden, Robert J.; And Others

Caring for a family member with dementia is a major source of stress for the caregiver. To assess the impact of caring for an impaired family member and to evaluate the effectiveness of intervention programs, 34 caregivers of relatives with dementia completed an amended form of the Philadelphia Geriatric Center's Caregiver Survey and two…

Caregiving to persons living with HIV/AIDS: experiences of Vietnamese family members.

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Lundberg, Pranee C; Doan, Thoa Thi Kim; Dinh, Thu Thi Xuan; Oach, Nhung Kim; Le, Phong Hoang

2016-03-01

To examine the experiences of caregiving among Vietnamese family members of persons living with HIV/AIDS. As the number of persons living with HIV/AIDS increases, the need of family caregivers who can take responsibility for the home care of these persons increases. Vietnam has one of the fastest growing HIV epidemics in Asia. A descriptive cross-sectional study with quantitative and qualitative methods was used. A purposive sample of 104 family caregivers, both male and female, participated voluntarily by answering a questionnaire of caregiver burden, and 20 of them participated in in-depth interview. Female caregivers were mainly mothers and wives while male caregivers were mainly husbands, fathers and siblings. The largest group of family caregivers reported moderate to severe burden. There was no difference between genders in total caregiver burden, but there were several differences between older and younger caregivers in some items of caregiver burden. Five categories of experiences emerged: Different types of caregiving to persons living with HIV/AIDS, cultural and religious issues associated with caregiving, keeping secret to avoid stigma and discrimination, lack of knowledge about disease and provision of care, and fear, anxiety and frustration. Stigma and discrimination should be decreased by providing knowledge to the general public about HIV/AIDS, in particular about ways of transmission and protection. Special knowledge should be given to family caregivers to enable them to give care to persons living with HIV/AIDS at home. This could be done through culturally appropriate training/intervention programmes in which coping methods should be included. Support group interventions should also be carried through. The results obtained can be used as baseline information. Health care providers should consider gender, age and culture of family members of persons living with HIV/AIDS. Knowledge about HIV/AIDS, provision of care at home and in hospital, and

Understanding the experience of caring for children with haemophilia: cross-sectional study of caregivers in the United States.

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DeKoven, M; Karkare, S; Kelley, L A; Cooper, D L; Pham, H; Powers, J; Lee, W C; Wisniewski, T

2014-07-01

Congenital haemophilia is an inherited bleeding disorder typically diagnosed at birth or shortly thereafter. Haemophilia imposes a significant burden on patients and their caregivers. The aim of the study was to quantify the overall burden of haemophilia on caregivers in the USA using a novel disease-specific questionnaire and the previously validated CarerQol. Targeted literature review and a previous survey conducted by the authors was used to develop an online questionnaire with six burden domains of interest to caregivers (emotional stress, financial, sacrifice, medical management, child's pain and transportation) and several visual analogue scales (VAS). Content validity of the questionnaire was confirmed by three haemophilia caregivers. The study sample consisted of caregivers of children with haemophilia identified via a previously developed opt-in research database. Descriptive statistics were employed for demographic and clinical characteristics; a generalized linear model (GLM) was used to identify factors influencing caregiver burden. A total of 310 caregivers completed the survey (45.5% response rate). Most of the participating caregivers were mothers of a child with haemophilia (88%), between 35 and 44 years of age (48%), and with a college education or a postgraduate degree (63%). 'Child's pain' was identified as the most burdensome domain to caregivers (median score = 3.50 out of 5), followed by 'emotional stress' (2.67), 'financial' (2.40), 'transportation' (2.33), 'sacrifice' (2.17) and 'medical management' (2.00) domains. Although higher income exhibited a protective effect, episodes of bleeds, current presence of an inhibitor and lower caregiver productivity in the past month negatively affected caregiver burden per GLM results. Training and educational programs should potentially be developed to address caregiver burden. © 2014 John Wiley & Sons Ltd.

Annual patient and caregiver burden of oncology clinic visits for granulocyte-colony stimulating factor therapy in the US.

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Stephens, J Mark; Li, Xiaoyan; Reiner, Maureen; Tzivelekis, Spiros

2016-01-01

Prophylactic treatment with granulocyte-colony stimulating factors (G-CSFs) is indicated for chemotherapy patients with a significant risk of febrile neutropenia. This study estimates the annual economic burden on patients and caregivers of clinic visits for prophylactic G-CSF injections in the US. Annual clinic visits for prophylactic G-CSF injections (all cancers) were estimated from national cancer incidence, chemotherapy treatment and G-CSF utilization data, and G-CSF sales and pricing information. Patient travel times, plus time spent in the clinic, were estimated from patient survey responses collected during a large prospective cohort study (the Prospective Study of the Relationship between Chemotherapy Dose Intensity and Mortality in Early-Stage (I-III) Breast Cancer Patients). Economic models were created to estimate travel costs, patient co-pays and the economic value of time spent by patients and caregivers in G-CSF clinic visits. Estimated total clinic visits for prophylactic G-CSF injections in the US were 1.713 million for 2015. Mean (SD) travel time per visit was 62 (50) min; mean (SD) time in the clinic was 41 (68) min. Total annual time for travel to and from the clinic, plus time at the clinic, is estimated at 4.9 million hours, with patient and caregiver time valued at $91.8 million ($228 per patient). The estimated cumulative annual travel distance for G-CSF visits is 60.2 million miles, with a total transportation cost of $28.9 million ($72 per patient). Estimated patient co-pays were $61.1 million, ∼$36 per visit, $152 per patient. The total yearly economic impact on patients and caregivers is $182 million, ∼$450 per patient. Data to support model parameters were limited. Study estimates are sensitive to the assumptions used. The burden of clinic visits for G-CSF therapy is a significant addition to the total economic burden borne by cancer patients and their families.

Web-based health interventions for family caregivers of elderly individuals: A Scoping Review.

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Wasilewski, Marina B; Stinson, Jennifer N; Cameron, Jill I

2017-07-01

For the growing proportion of elders globally, aging-related illnesses are primary causes of morbidity causing reliance on family members for support in the community. Family caregivers experience poorer physical and mental health than their non-caregiving counterparts. Web-based interventions can provide accessible support to family caregivers to offset declines in their health and well-being. Existing reviews focused on web-based interventions for caregivers have been limited to single illness populations and have mostly focused on the efficacy of the interventions. We therefore have limited insight into how web-based interventions for family caregiver have been developed, implemented and evaluated across aging-related illness. To describe: a) theoretical underpinnings of the literature; b) development, content and delivery of web-based interventions; c) caregiver usage of web-based interventions; d) caregiver experience with web-based interventions and e) impact of web-based interventions on caregivers' health outcomes. We followed Arksey and O'Malley's methodological framework for conducting scoping reviews which entails setting research questions, selecting relevant studies, charting the data and synthesizing the results in a report. Fifty-three publications representing 32 unique web-based interventions were included. Over half of the interventions were targeted at dementia caregivers, with the rest targeting caregivers to the stroke, cancer, diabetes and general frailty populations. Studies used theory across the intervention trajectory. Interventions aimed to improve a range of health outcomes for caregivers through static and interactive delivery methods Caregivers were satisfied with the usability and accessibility of the websites but usage was generally low and declined over time. Depression and caregiver burden were the most common outcomes evaluated. The interventions ranged in their impact on health and social outcomes but reductions in perception of

Benefit finding for Chinese family caregivers of community-dwelling stroke survivors: A cross-sectional study.

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Mei, Yongxia; Wilson, Susan; Lin, Beilei; Li, Yingshuang; Zhang, Zhenxiang

2018-04-01

To identify whether benefit finding is a mediator or moderator in the relationship between caregiver burden and psychological well-being (anxiety and depression) in Chinese family caregivers of community-dwelling stroke survivors. Family caregivers not only bear a heavy burden, a high level of anxiety and depression, but also experience benefit finding (positive effects result from stressful events). However, the relationships among benefit finding, caregiver burden and psychological well-being in Chinese family caregivers are not well known. This study was a cross-sectional correlational design. Caregivers (n = 145) of stroke survivors were recruited from two communities in Zhengzhou, China. Data were collected by face-to-face interviews with structured questionnaires, examining caregiver burden, benefit finding and psychological well-being of caregivers. A hierarchical regression analysis explored whether caregiver burden and benefit finding were associated with anxiety and depression of caregivers. The moderator role of benefit finding was examined by testing the significance of the interaction between caregiver burden and benefit finding. A mediational model was used to test benefit finding as a mediator between caregiver burden and psychological well-being of caregivers using process in spss 21.0. Caregiver burden and benefit finding were significantly associated with both anxiety and depression of caregivers. Benefit finding did not portray a moderating role, but portrayed the mediator role in the relationship between caregiver burden, anxiety and depression in caregivers. This study provides the preliminary evidence to nurses that intervention focus on benefit finding may help improve the psychological well-being of caregivers. This study offers nurses rational for assessing caregiver's negative emotions and benefit finding. By targeting benefit finding, the nurse may guide caregivers in benefit identification and implement interventions to reduce anxiety

The effect of caregiver support interventions for informal caregivers of community-dwelling frail elderly: a systematic review

Directory of Open Access Journals (Sweden)

Maja Lopez Hartmann

2012-08-01

Full Text Available Introduction: Informal caregivers are important resources for community-dwelling frail elderly. But caring can be challenging. To be able to provide long-term care to the elderly, informal caregivers need to be supported as well. The aim of this study is to review the current best evidence on the effectiveness of different types of support services targeting informal caregivers of community-dwelling frail elderly. Methods: A systematic literature search was performed in Medline, PsychINFO, Ovid Nursing Database, Cinahl, Embase, Cochrane Central Register of Controlled Trials and British Nursing Index in september 2010. Results: Overall, the effect of caregiver support interventions is small and also inconsistent between studies. Respite care can be helpful in reducing depression, burden and anger. Interventions at the individual caregivers' level can be beneficial in reducing or stabilizing depression, burden, stress and role strain. Group support has a positive effect on caregivers' coping ability, knowledge, social support and reducing depression. Technology-based interventions can reduce caregiver burden, depression, anxiety and stress and improve the caregiver's coping ability. Conclusion: Integrated support packages where the content of the package is tailored to the individual caregivers' physical, psychological and social needs should be preferred when supporting informal caregivers of frail elderly. It requires an intense collaboration and coordination between all parties involved.

Communication Coaching: A Case Study of Family Caregiver Burden.

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Wittenberg, Elaine; Ferrell, Betty; Koczywas, Marianna; Ferraro, Catherine

2017-04-01

Problematic communication among providers, patients, and their family members can affect the quality of patient care, causing stress to all parties involved and decreased opportunities for collaborative decision making.
. The purpose of this article is to present one case from a pilot study of a family caregiver intervention focused on communication. 
. The nurse-delivered communication intervention includes a written communication guide for family caregivers, as well as a one-time nurse communication coaching call. The call is aimed at identifying caregiver communication concerns, providing communication education, and role playing problematic communication.
. Psychological distress and caregiver confidence in communication were improved for the caregiver. Data presented from the case study demonstrate the need for family caregiver communication support and training and the potential benefits of such training.

Family caregivers in rural Uganda: the hidden reality.

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Kipp, Walter; Tindyebwa, Denis; Rubaale, Tom; Karamagi, Ednah; Bajenja, Ellen

2007-01-01

We conducted 16 in-depth interviews with family caregivers of AIDS patients in three rural districts in western Uganda. They were selected from a client visitation list of the home-based care program for AIDS patients, based on volunteer participation. Family caregivers reported huge problems associated with providing the necessary psychological, social, and economic care. They also said that the physical and emotional demands of caregiving are overwhelming daily challenges. Most support to AIDS patients provided by family, friends, and the churches. The study highlights the great burden of caregivers, in sub-Saharan Africa who most often are elderly women and young girls. This study examine, the burden and related health issues of family caregivers, primarily women, for AIDS patients in Uganda. It was part of a broad research project using qualitative methods on family caregiving in the home environment in sub-Saharan Africa. As the requirements for family care giving are often overwhelming for women under the conditions as they exist in Uganda and in other developing countries, it constitutes a gender issue of great importance that has not been appreciated fully in the international literature. Family caregiving is also of international relevance, as HIV/AIDS is a global pandemic of previously unknown proportions. In many poor countries, family caregiving is the most common and often the only care that AIDS patients receive, because clinic-based care often is not available close to home or is not affordable. Therefore, family caregiver support programs to alleviate this burden are essential for all those countries where HIV/AIDS is prevalent. Family caregiver burden encompasses medical, social, and economic issues at the household level, which requires an interdisciplinary approach in order to fully understand and appreciate the different dimensions of the family caregiver burden and its negative impact on the lives of so many women in so many countries.

Schizophrenia causes significant burden to patients' and caregivers' lives.

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Szkultecka-Dębek, Monika; Miernik, Katarzyna; Stelmachowski, Jarosław; Jakovljević, Miro; Jukić, Vlado; Aadamsoo, Kaire; Janno, Sven; Bitter, István; Tolna, Judit; Jarema, Marek; Jankovic, Slobodan; Pecenak, Jan; Vavrusova, Livia; Tavčar, Rok; Walczak, Jacek; Talbot, Darren; Augustyńska, Joanna

2016-06-01

Schizophrenia is a serious public health problem and is ranked among the most disabling diseases in the world. The sub-study presented here was part of a larger project to characterize the burden of schizophrenia on healthcare systems and on individuals living with the disease in Central and Eastern Europe (CEE). This sub-study aimed to assess and analyze the impact of schizophrenia on many aspects of the lives of patients and caregivers. Psychiatrists from selected centers in seven Central and Eastern European countries were asked to complete a questionnaire in order to collect information about the disease history, characteristics, treatment protocols and resources used for each randomly selected patient. All data were statistically analyzed and compared between countries. Data from 961 patients with schizophrenia (mean age 40.7 years, 45.1% female) were included in the analysis. The mean number of days spent in hospital per patient per year across all seven countries was 25.3 days. Hospitalization occurred on average once per year, with psychiatrist visits 9.4 times per year. Of the patients in the study, 61% were single, 12% divorced and 22% married or cohabiting. Almost 84% were living with relatives or a partner; only 17% lived alone and, on average, 25% of patients received support from social workers. Relatives provided care for approximately 60% of patients and 4% of them had to stop working in order to do so. Twenty-nine percent of the patients were unemployed, and 56% received a disability pension or were retired, with only 19% in full-time employment or education. Schizophrenia has a significant effect on the lives of patients and caregivers and impacts their social integration.

Factors influencing changes in health related quality of life of caregivers of persons with multiple chronic conditions.

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Duggleby, Wendy; Williams, Allison; Ghosh, Sunita; Moquin, Heather; Ploeg, Jenny; Markle-Reid, Maureen; Peacock, Shelley

2016-05-27

The majority of care for older adults with multiple chronic conditions (MCC) is provided by family (including friends) caregivers. Although caregivers have reported positive benefits to caregiving they also experience decreases in their physical and mental health. As there is a critical need for supportive interventions for this population, it is important to know what influences the health of family caregivers of persons with MCC. This research examined relationships among the changes from baseline to 6 months in health related quality of life (SF12v2) of family caregivers caring for older adults with multiple chronic conditions and the following factors: a) demographic variables, b) gender identity [Bem Sex Role Inventory (BSRI)] c) changes in general self-efficacy [General Self Efficacy Scale (GSES) (baseline to 6 months) and d)) changes in caregiver burden [Zarit Burden Inventory (ZBI)] baseline to 6 months. Specific hypothesis were based on a conceptual framework generated from a literature review. This is a secondary analysis of a study of 194 family caregivers who were recruited from two Canadian provinces Alberta and Ontario. Data were collected in-person, by telephone, by Skype or by mail at two time periods spaced 6 months apart. The sample size for this secondary analysis was n = 185, as 9 participants had dropped out of the study at 6 months. Changes in the scores between the two time periods were calculated for SF12v2 physical component score (PCS) and mental component score (MCS) and the other main variables. Generalized Linear Modeling was then used to determine factors associated with changes in HRQL. Participants who had significantly positive increases in their MCS (baseline to 6 months) reported lower burden (ZBI, p gender identity (which incorporates assertive and instrumental approaches to caregiving), and confidence in the ability to deal with difficult situations was positively related to improvement in mental health for caregivers of

The balance of give and take in caregiver-partner relationships: An examination of self-perceived burden, relationship equity, and quality of life from the perspective of care recipients following stroke.

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McPherson, Christine J; Wilson, Keith G; Chyurlia, Livia; Leclerc, Charles

2010-05-01

We examined the sense of being a burden to others or self-perceived burden (SPB) in people with stroke. A mail survey was completed by 57 former inpatients and their partner caregivers. The care recipient survey included measures of functional status, quality of life, marital satisfaction, equity in the relationship, and psychological distress, as well as SPB using the Self-Perceived Burden Scale (SPBS; Cousineau, McDowell, Hotz, & Hébert, 2003). The caregiver survey included similar measures in addition to a caregiver burden measure. SPB was found to be a prevalent and distressing concern. SPBS scores correlated with measures of functional status and mood; however, the correlations were highest for measures of family roles and work/productivity. Using equity theory as a basis to examine the SPB construct, care recipients who perceived themselves as overbenefiting from the relationship had significantly higher SPB scores than those whose relationship was viewed as equitable or underbenefiting. For some receiving care from a partner after stroke is associated SPB. This sense of burden is related to changes in help-seeking behavior, quality of life, and distress.

Validation of a model of family caregiver communication types and related caregiver outcomes.

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Wittenberg, Elaine; Kravits, Kate; Goldsmith, Joy; Ferrell, Betty; Fujinami, Rebecca

2017-02-01

Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types-Manager, Carrier, Partner, Lone-each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes. This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains. Corroboration between fieldnotes and self-reported communication for caregivers (n = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life. This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test

Apoyo social y Carga de la persona cuidadora en una Unidad de Salud Mental Infantil Social support and burden's caregiver in a children's Mental Health Unit

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José Manuel Perea-Baena

2009-09-01

Full Text Available Los cuidados parentales de hijos con trastornos mentales producen estrés y dificultades de afrontamiento en las familias. Muchos estudios han asociado la carga familiar con factores como el apoyo social y dificultades del paciente como problemas de conducta o gravedad del Trastorno. Se realizó un análisis transversal para averiguar la influencia del apoyo social, apoyo familiar y gravedad del trastorno en la sobrecarga de la persona cuidadora. De un total de 96 pacientes, han participado 83 madres y 55 padres. Los resultados muestran mayor sobrecarga en las madres, una relación negativa entre apoyo y sobrecarga y una influencia de la gravedad del trastorno en la sobrecarga.Parental care for a child with mental disorder generates stress and coping difficult. Many studies have associated burden's caregiver with factors such social support and child factor such child behaviour problems and severity of disability. This study employed a cross-sectional design to verify the influence of the social support, family support and severity of disorder in the caregiver's burden. Of a whole of 96 patients, 83 mothers and 55 parents have taken part. Results showed major burden in the mother, a negative relation between social support and burden and an influence of the severity of disorder in caregiver's burden.

Female caregivers and stroke severity determines caregiver stress in stroke patients

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Bindu Menon

2017-01-01

Full Text Available Background: Stroke is among the major causes of short- and long-term disability. This study aimed to understand the caregivers (CGs stress in stroke survivors. Materials and Methods: A 22-item questionnaire was administered to 201 CGs of stroke survivors. The variables tested were physical and mental health, social support, financial, and personal problems. CGs were divided into Group A (Barthel index [BI] 75 according to patient's BI, according to gender (male and female CG and relation; spouses (wife, husband, daughters, sons, daughter-in-law, grandchildren, and rest (father, mother, brother, sister, and in-laws. Data were analyzed using SPSS software version–21. Data were analyzed to determine which variables of the patient effects the CG stress. Results: Majority of the CGs (74.62% were females. 65% of CGs graded their burden as moderate to severe. 81% of CGs had left their work for caregiving. More than half of the CGs felt sleep disturbance and physical strain. Psychological instability and financial burdens were reported in 3/4th of CGs. Group A CGs faced more sleep, financial, health, and social life disturbance. Patient's bladder and bowel problems, shoulder pain, patients noncooperative attitude for medication administration, and physiotherapy were more upsetting for Group A CGs. Female CGs were subjected to more sleep disturbance, physical and psychological stress, faced more difficulty regarding the patient's bladder, bowel, personal hygiene needs, and physiotherapy. Female CGs felt less motivated in caregiving than male CGs. Wives and daughters-in-law experienced more burden. Time spent and burden perceived was more by female CGs (χ2 = 15.199, P = 0.002 than males (χ2 = 11.931, P = 0.018; wives and daughters than other relations (χ2 = 32.184, P = 0.000, (χ2 = 35.162, P = 0.019. Conclusion: Our study showed that caregiving burden was predominantly shouldered by females CGs. CGs faced physical, psychological, and socioeconomic

Resilience Modulators and Overburden in Major Caregivers of Advanced Cancer Patients

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Anay González Guerra

2017-03-01

Full Text Available Foundation: the caregiver plays an important role in helping and supporting a patient with cancer, but at the same time has the emotional and work burden which this work presupposes. Objective: to determine the resilience modulating factors and the degree of burden in major caregivers of advanced cancer patients. Method: a descriptive study was developed at the Area III Policlinic Cienfuegos during the period from December 2012 to March 2013. The universe was constituted by 25 primary caregivers of patients in an advanced stage of the disease. The studied variables were: sex, age, scholarship, occupation, marital status, kinship, time to patient care, self-esteem, optimism, emotional intelligence, and burden. The techniques used were: questionnaire and test of emotional intelligence, Coopersmith self-esteem inventory, caregiver burden scale by Zarit. Results: ages between 51 and 72 years predominated 48 %, 88 % were female, 40 % had elementary school level and 48 % were married, 72 % were housewives, 44 % were patients spouses, 52 % less than a year of care giving. 60 % had an intense burden, 48 % low level of self-esteem and an intense burden. 58.3 % of caregivers with low emotional intelligence had an intense burden. Conclusion: resilience modulators, self-esteem and emotional intelligence determine the level of burden suffered by major caregivers of advanced cancer patients.

Enhanced Psychosocial Support for Caregiver Burden for Patients With Chronic Kidney Failure Choosing Not to Be Treated by Dialysis or Transplantation: A Pilot Randomized Controlled Trial.

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Chan, Kwok Ying; Yip, Terence; Yap, Desmond Y H; Sham, Mau Kwong; Wong, Yim Chi; Lau, Vikki Wai Kee; Li, Cho Wing; Cheng, Benjamin Hon Wai; Lo, Wai Kei; Chan, Tak Mao

2016-04-01

Family caregivers of patients with chronic kidney failure have increased burden, as reflected by their high frequency of physical and mental disturbances. The impact of enhanced psychosocial support to caregivers of patients with chronic kidney failure remains unclear. Open-label randomized controlled trial. All new patients referred to the renal palliative clinic were screened. Caregivers of patients who met the following criteria were recruited: (1) chronic kidney failure as defined by creatinine clearance renal care (control). Enhanced psychosocial support included counseling and psychosocial interventions by an on-site palliative care nurse and designated social worker. Each caregiver was followed up at 2- to 4-week intervals for up to 6 months. Zarit Burden Inventory (ZBI) and Hospital Anxiety and Depression Scale (HADS) in caregivers and McGill Quality of Life scores in patients of both groups were compared. 29 pairs of family caregivers/patients with chronic kidney failure were randomly assigned (intervention, n=14; control, n=15). Mean ages of patients and caregivers were 81.6 ± 5.1 and 59.8 ± 14.2 (SD) years, respectively. The intervention group showed significantly lower ZBI scores than the control group at 1 and 3 months (22.0 ± 5.3 vs 31.6 ± 9.5 and 21.3 ± 6.6 vs 33.4 ± 7.2; P=0.006 and P=0.009, respectively). HADS anxiety scores of caregivers who received the intervention were significantly lower than those of controls at 1 and 3 months (7.1 ± 3.2 vs 10.1 ± 2.2 and 6.5 ± 4.5 vs 11.0 ± 3.1; P=0.01 and P=0.03, respectively). Insignificant reductions in ZBI and HADS scores were found at 6 months. 19 patients died (intervention, n=10; control, n=9) during the study period. The study is limited by a relatively small sample size and short duration. Enhanced psychosocial support program in patients with chronic kidney failure and caregivers resulted in an early significant reduction in caregiver burden and anxiety. Copyright © 2016 National Kidney

Systematic review of caregiver burden in spouses and partners providing informal care to wounded, injured or sick (WIS) military personnel.

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Thandi, Gursimran; Harden, L; Cole, L; Greenberg, N; Fear, N T

2018-02-12

For the purposes of this review, caregivers are individuals who provide care that is typically unpaid and usually takes place at home. This systematic review aims to identify burden among spouses/partners caring for wounded, injured or sick military personnel and the factors associated with caregiver burden. A systematic review was undertaken using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses reporting guidelines. Five electronic databases and relevant websites were searched. Two reviewers appraised the quality of the studies and carried out data extraction. Ten original papers were identified, of which eight were quantitative studies and two were qualitative. These papers highlighted the potential negative impact caregiving can have on spouses/partners and also some of the positive aspects of caring that can strengthen intimate relationships. Caring for an injured or ill military spouse or partner is a difficult task, compounded by the complexity of dealing with potentially both their physical and mental health problems. However, research has also identified some positive aspects of caring that can strengthen intimate relationships. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Vulnerable pregnant women in antenatal practice : Caregiver's perception of workload, associated burden and agreement with objective caseload, and the influence of a structured organisation of antenatal risk management

NARCIS (Netherlands)

de Groot, Nynke; Venekamp, Angélica A; Torij, Hanneke W; Lambregtse-Van den Berg, Mijke P; Bonsel, Gouke J

INTRODUCTION: pregnancy care for vulnerable women is often perceived as a burden by caregivers as vulnerable clients require complex case management, additional time, and more often show adverse perinatal outcomes. Vulnerable clients bring about additional work strain for the caregiver, especially

Predictors of caregiving satisfaction in informal caregivers of people with dementia

DEFF Research Database (Denmark)

de Labra, Carmen; C. Millan Calenti, Jose; Buján, Ana

2015-01-01

Objective: The prevalence of dementia is increasing and consequently the demands from families, institutions and healthcare system. Although a substantial amount of research on caregiving has emphasized the negative aspects of caregiving, specifically on caregiver burden and depression, less...... attention has been paid to the positive aspects of caregiving. The aim of the present work was to study the phenomenon of caregiving satisfaction in informal caregivers of people with dementia by assessing their likely predictors. Methods: A stress process model was used to study caregiver’s satisfaction...... (measured using the Revised Caregiving Satisfaction Scale) on 101 informal caregivers of patients with dementia in relation to the caregiver’s background and context, stress-related factors, and mediators. Results: The regression model has an adjusted R2 of 0.20, which indicates that having a consanguinity...

Effects of the situational context and interactional process on the quality of family caregiving.

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Phillips, L R; Morrison, E; Steffl, B; Chae, Y M; Cromwell, S L; Russell, C K

1995-06-01

A staged theoretical model designed to explain the quality of elder caring by family members was tested. The model posits how the situational context, interactional process, and caregiving burden perceived by the caregiver affect the quality of elder caring. The purpose was to determine the amount of variance explained by the interactional process beyond that explained by the situational context and caregiving burden. Data were collected from 209 elder-caregiver dyads using interviews, observations, and caregiver self-reports. The strongest predictors of caregiving burden were the caregiver's stressful negative life events (situational context) and discrepancy between past and present image of elder (interactional process). The strongest predictors of quality of elder caring were the caregiver's perception of subjective burden and a monitoring role definition on the part of the caregiver (interactional process).

Visual Arts Education improves self-esteem for persons with dementia and reduces caregiver burden: A randomized controlled trial.

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Richards, Allan G; Tietyen, Ann C; Jicha, Gregory A; Bardach, Shoshana H; Schmitt, Frederick A; Fardo, David W; Kryscio, Richard J; Abner, Erin L

2018-01-01

A Visual Arts Education program was tested among 26 pairs of persons with dementia and their caregivers. Pairs were randomized to Visual Arts Education or control groups, and each group met once per week for two months (8 weeks) to participate in activities with a trained arts instructor. Groups were assessed at baseline, two months, and six months. The Visual Arts Education group received instruction and produced a different type of artistic work each week. The pedagogical strategy was designed so that each activity was increasingly novel, challenging, and complex. The control group viewed slide shows, participated in discussions about art, and made paintings. At the six-month follow-up, significant improvements in caregiver burden and self-esteem for the persons with dementia were found in the Visual Arts Education group. The Visual Arts Education pedagogical approach shows the potential for effectiveness for improving quality of life for persons with dementia and their caregivers.

Stress in the caregivers of Alzheimer's patients: an experimental investigation in Italy.

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Aguglia, E; Onor, M L; Trevisiol, M; Negro, C; Saina, M; Maso, E

2004-01-01

In Italy, the family constitutes the major caregiving response to the needs of the elderly who are no longer self-sufficient. These caregivers are often wives or daughters who have chosen to keep the patient at home with them. On average, three-quarters of the caregiver's day is devoted to the patient, a proportion that tends to increase linearly as the disease progresses. The primary aim of our study was to describe a group of Italian caregivers of patients with a diagnosis of dementia to assess their levels of stress. We then correlated these caregivers with a number of sociodemographic variables and the patients' degree of cognitive impairment and independence in daily life activities. The study was conducted on a sample group of 236 caregivers of patients with a diagnosis of Alzheimer's disease (AD) according to the DSM-IV criteria. Each caregiver took part in a sociodemographic interview and filled in two questionnaires: the Caregiver Burden Inventory (CBI), to quantify the caregiving workload and the Brief Symptom Inventory (BSI), to assess the level of anxiety and depression. Patients were administered the Mini-Mental State Examination (MMSE) to evaluate their level of cognitive impairment and the Instrumental Activities of Daily Living (IADL) and Activities of Daily Living (ADL) tests to quantify their level of independence. The analysis of the results shows that the average Italian caregiver of an AD patient is a woman, approximately 60 years old. The majority of caregivers are spouses, followed by children. In general, these caregivers work at home, are housewives or retired, and are personally involved in caring for the patients. The greater the level of a patient's cognitive impairment and the less independent they are, the greater amount of care and supervision they require, leaving less free time for the caregiver; this leads to higher levels of anxiety related to caregiving. Toward the final stages of the disease, patient care tasks take up nearly

Web-Based Interventions to Improve Mental Health, General Caregiving Outcomes, and General Health for Informal Caregivers of Adults With Chronic Conditions Living in the Community: Rapid Evidence Review.

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Ploeg, Jenny; Markle-Reid, Maureen; Valaitis, Ruta; McAiney, Carrie; Duggleby, Wendy; Bartholomew, Amy; Sherifali, Diana

2017-07-28

Most adults with chronic conditions live at home and rely on informal caregivers to provide support. Caregiving can result in negative impacts such as poor mental and physical health. eHealth interventions may offer effective and accessible ways to provide education and support to informal caregivers. However, we know little about the impact of Web-based interventions for informal caregivers of community-dwelling adults with chronic conditions. The purpose of this rapid evidence review was to assess the impact of Web-based interventions on mental health, general caregiving outcomes, and general health for informal caregivers of persons with chronic conditions living in the community. A rapid evidence review of the current literature was employed to address the study purpose. EMBASE, MEDLINE, PsychInfo, CINAHL, Cochrane, and Ageline were searched covering all studies published from January 1995 to July 2016. Papers were included if they (1) included a Web-based modality to deliver an intervention; (2) included informal, unpaid adult caregivers of community-living adults with a chronic condition; (3) were either a randomized controlled trial (RCT) or controlled clinical trial (CCT); and (4) reported on any caregiver outcome as a result of use or exposure to the intervention. A total of 20 papers (17 studies) were included in this review. Study findings were mixed with both statistically significant and nonsignificant findings on various caregiver outcomes. Of the 17 included studies, 10 had at least one significant outcome. The most commonly assessed outcome was mental health, which included depressive symptoms, stress or distress, and anxiety. Twelve papers examined the impact of interventions on the outcome of depressive symptoms; 4 found a significant decrease in depressive symptoms. Eight studies examined the outcome of stress or distress; 4 of these found a significant reduction in stress or distress as a result of the intervention. Three studies examined the

Comparisons Between Hispanic and Non-Hispanic White Informal Caregivers

OpenAIRE

Nancy J. Karlin; Joyce Weil; James Gould

2012-01-01

This study focuses on understanding similarities and differences between non-Hispanic White and Hispanic informal caregivers of those with Alzheimer’s disease. Comparisons take place between caregivers reporting high levels of burden as indicated by the Zarit Burden Inventory. Data suggest similarities and differences between Hispanic (n = 17) and non-Hispanic White (n = 17) caregivers in this study in several areas. H...

Voices of Informal Caregivers and Community Stakeholders: Whether and How to Develop an Informal Caregiver Training Program.

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Phillips, Sara S; Ragas, Daiva M; Tom, Laura S; Hajjar, Nadia; Dong, XinQi; Simon, Melissa A

2016-06-01

Our primary objective was to gather pilot data from caregivers and stakeholders to guide the development of a training program to assist informal caregivers in re-entering the job market. The goal of the program would be to help caregivers rebound from their incurred economic burden by transitioning into a paid caregiving or other health-service role. The economic burden they bear often necessitates a return to the workforce following caregiving; yet the act of returning is complicated by an extended absence from the workforce and a lack of experience in other verifiably skilled and paid roles. We interviewed 37 stakeholders and 25 caregivers of a chronically or terminally ill family member or friend in a suburban collar county close to Chicago. The interview questions considered the economic impact of illness, as well as the feasibility, logistics, and options of a training program for caregivers. Our data gathered from caregivers and leaders within this community support the acceptability of such a training program for informal caregivers, and also provide practical advice for development and implementation related to training cost, length, content, and instructional practices.

Online Training and Support Programs Designed to Improve Mental Health and Reduce Burden Among Caregivers of People With Dementia: A Systematic Review

NARCIS (Netherlands)

Egan, Kieren J.; Pinto-Bruno, Ángel C.; Bighelli, Irene; Berg-Weger, Marla; van Straten, Annemieke; Albanese, Emiliano; Pot, Anne Margriet

Introduction: Dementia poses a considerable socioeconomic burden to society. On a global scale, family and other unpaid care predominates. Supporting caregivers is crucial, but scalable interventions are currently lacking. Because a growing number of studies have suggested that online training and

Compassionate Love in Individuals With Alzheimer’s Disease and Their Spousal Caregivers: Associations With Caregivers’ Psychological Health

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Monin, Joan K.; Schulz, Richard; Feeney, Brooke C.

2015-01-01

Purpose of the Study: To examine whether compassionate love in both individuals with Alzheimer’s disease (AD) and their spousal caregivers related to less caregiving burden, more positive caregiving appraisals, and less depressive symptoms for caregivers. Design and Methods: Fifty-eight individuals with AD and their spousal caregivers participated in interviews in which both partners reported their compassionate love for their partner, and caregivers self-reported burden, positive appraisals of caregiving, and depressive symptoms. Results: As hypothesized, both AD individuals’ and caregivers’ compassionate love were associated with less burden and more positive appraisals of caregiving. Also, care givers’ compassionate love mediated the association between AD individuals’ compassionate love and caregivers’ burden as well as the association between AD individuals’ compassionate love and caregivers’ positive appraisals of caregiving. Finally, there was a marginally significant association between caregivers’ compassionate love and less caregiver depressive symptoms. Implications: Results suggest that AD individuals’ compassionate love is related to compassionate love in caregivers, which in turn relates to reduced burden but not significantly less depressive symptoms for caregivers. Assessing caregivers’ and AD individuals’ feelings of compassionate love may be useful in identifying caregivers who are resilient and those who are at a heightened risk for caregiving burden. Also, interventions that enhance both partners’ compassionate love may benefit caregivers. PMID:24534607

Positive caregiving experiences are associated with life satisfaction in spouses of stroke survivors.

Science.gov (United States)

Kruithof, Willeke J; Visser-Meily, Johanna M A; Post, Marcel W M

2012-11-01

Studies into caregivers usually have been focused on negative caregiving experiences. This study is based on the hypotheses that positive caregiving experiences (i.e., self-esteem derived from caregiving) of spouses of stroke patients also need to be taken into account, and that these are related to life satisfaction in 2 ways: first, by a direct association with life satisfaction, and second, indirectly by way of a buffer effect (i.e., by compensating for the impact of negative caregiving experiences on life satisfaction). In this cross-sectional study (n = 121) 3 years poststroke, the Caregiver Reaction Assessment was used to assess caregiver burden (Burden) and self-esteem derived from caregiving (Self-esteem scale). Life satisfaction was measured with the Life Satisfaction Questionnaire (LiSat-9). Spearman correlations and regression analyses were performed. Both Self-esteem and Burden scores were associated with life satisfaction (correlation coefficients 0.35 and -0.74, respectively). An interaction effect was also found (P = .006); spouses who perceived both high Burden and high Self-esteem reported significantly higher life satisfaction scores (mean 4.2, standard deviation [SD] 0.5) than spouses who perceived high Burden but low Self-esteem (mean 3.6, SD 0.7). Positive caregiving experiences are related to spouses' life satisfaction 3 years poststroke and mediate the impact of burden on life satisfaction. Positive caregiving experiences should get more attention in rehabilitation research and practice. Copyright © 2012 National Stroke Association. Published by Elsevier Inc. All rights reserved.