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

PubMed

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 < 0.001), lack of privacy (p = 0.029), and caring for persons with dementia (PWD) (p = 0.001). On multivariate regression, FDWs who cared for PWD were 5.47 times (p = 0.013) more likely to experience burden, while FDWs who encountered language difficulties were 5.46 times (p = 0.030) more likely to experience burden. Filipinos FDWs were 9.73 times more likely to express burden (p < 0.001) compared to their 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.

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

PubMed Central

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 burden among informal caregivers of an adult or older adult. Methods 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. Results 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). Conclusions 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. Implications of key findings 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

Positive Aspects of Caregiving and Caregiver Burden: A Study of Caregivers of Patients With Dementia.

PubMed

Abdollahpour, Ibrahim; Nedjat, Saharnaz; Salimi, Yahya

2018-01-01

Now positive aspect of caregiving (PAC) is well-defined as caregiver gains, satisfaction, meaningful life, and enhanced family relationship. The adjusted association of PAC and caregiver burden is not well acknowledged. This study investigated the association of caregiver burden and PAC adjusting for potential confounders. This was a cross-sectional study that recruited 132 caregivers. A linear regression model with PAC was used to estimate the adjusted associations. The caregiver burden was negatively associated with PAC (mean difference in PAC per a 1-unit increase in caregiver burden = -0.12, 95% confidence interval: -0.18 to -0.056; P < .001). This association remained after adjustment for caregivers' age and marital status as well as patients' dependency level. The negative significant association of caregiver burden with PAC reinforces the need for interventional and/or educational programs aiming at decreasing the overall imposed burden. This can play an important role in improving caregivers' general health and quality of life.

Cultural predictors of caregiving burden of Chinese-Canadian family caregivers.

PubMed

Lai, Daniel W L

2007-01-01

The growth of research knowledge on culturally diverse family caregivers for the aging population lags behind the increase of culturally diverse populations in Canada. This study examines the effects of culture, as manifested through cultural variables, on the caregiving burden of family caregivers in a Chinese-Canadian community. A random sample of 339 Chinese-Canadian caregivers for elderly relatives completed a telephone survey. Results of hierarchical stepwise multiple regression analysis reported the predicting effects of culture-related variables on caregiving burden. The findings indicated that being an immigrant, having a Western or non-Western religion as compared to having no religion, and having a lower level of filial piety, predicted a higher level of caregiving burden. Chinese tradition does not exempt the caregivers from being burdened. Policies and practices should address the needs of family caregivers according to the intra-cultural variations identified in this study.

Correlates of caregiver burden among family caregivers of older Korean Americans.

PubMed

Casado, Banghwa; Sacco, Paul

2012-05-01

Despite the rapid growth of older ethnic minority populations, knowledge is limited about informal caregiving among these groups. Our aim was to identify correlates of caregiver burden among family caregivers of older Korean Americans (KAs). A cross-sectional survey collected data from 146 KA caregivers. Using a modified stress-appraisal model, we examined background and context characteristics (caregiver sex, relationship to care recipient, college education, English proficiency, time in caregiving role, family support network, friend support network), a primary stressor (care recipient functional dependency), a primary appraisal (caregiving hours), and resources (family agreement, care management self-efficacy, service use self-efficacy) as potential correlates of caregiver burden. Interactions between the primary stressor, primary appraisal, and resources were also tested. Being female and the care recipient's spouse were associated with higher burden. Conversely, a larger family support network, greater family agreement, and greater care management self-efficacy were associated with lower burden. A significant interaction was detected between functional dependency and family agreement; higher levels of family agreement moderated the association between care recipient functional dependency and caregiver burden. Interventions to reduce caregiver burden in KA caregivers may be more effective if they include approaches specifically designed to build family support, improve family agreement, and increase caregivers' self-efficacy.

Coping Strategy and Caregiver Burden Among Caregivers of Patients With Dementia.

PubMed

Huang, Mei-Feng; Huang, Wen-Hui; Su, Yi-Ching; Hou, Shu-Ying; Chen, Hui-Mei; Yeh, Yi-Chun; Chen, Cheng-Sheng

2015-11-01

This study aims to examine whether coping strategies employed by caregivers are related to distinct symptoms of patients with dementia and to investigate the associations between burden and coping among caregivers of patients with dementia. A cross-sectional study design was used. A total of 57 caregivers of patients with dementia were enrolled. Coping strategies were assessed using the Ways of Coping Checklist, and burden was assessed using the Chinese version of Caregiver Burden Inventory. Correlations between coping and patients' behavior or memory problems were examined. Severities of behavior and memory problems were adjusted to examine the correlations between caregiver burden and coping strategies. The patients' disruptive behavior problems were associated with avoidance, and depression problems were associated with avoidance and wishful thinking. After adjusting for severity of behavior problems, coping strategies using avoidance were positively correlated with caregiver burden. Emotion-focused coping strategies are a marker of caregiver burden. © The Author(s) 2013.

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

PubMed

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.

Psychosocial factors of caregiver burden in child caregivers: results from the new national study of caregiving.

PubMed

Cohen, Steven A; Cook, Sarah; Kelley, Lauren; Sando, Trisha; Bell, Allison E

2015-08-07

Over 50 million informal caregivers in the United States provide care to an aging adult, saving the economy hundreds of billions of dollars annually from costly hospitalization or institutionalization. Despite the benefits associated with caregiving, caregiver stress can lead to negative physical and mental health consequences, or "caregiver burden". Given these potential negative consequences of caregiver burden, it is important not only to understand the multidimensional components of burden but to also understand the experience from the perspective of the caregiver themselves. Therefore, the objectives of our study are to use exploratory factor analysis to obtain a set of latent factors among a subset of caregiver burden questions identified in previous studies and assess their reliability. All data was obtained from the 2011 National Study of Caregiving (NSOC). Exploratory factor analysis (EFA) was performed to identify a set of latent factors assessing four domains of caregiver burden in "child caregivers": those informal caregivers who provide care to a parent or stepparent. Sensitivity analysis was also conducted by repeating the EFA on demographic subsets of caregivers. After multiple factor analyses, four consistent caregiver burden factors emerged from the 23 questions analyzed: Negative emotional, positive emotional, social, and financial. Reliability of each factor varied, and was strongest for the positive emotional domain for caregiver burden. These domains were generally consistent across demographic subsets of informal caregivers. These results provide researchers a more comprehensive understanding of caregiver burden to target interventions to protect caregiver health and maintain this vital component of the US health care system.

Caregiver burden for informal caregivers of patients with dementia: A systematic review.

PubMed

Chiao, C-Y; Wu, H-S; Hsiao, C-Y

2015-09-01

Dementia is an irreversible illness. The caregiver is expected to assume increased responsibility as the condition of the person with dementia declines. It is important to explore the factors constituting caregiver burden on the informal caregivers of people with dementia. The purpose of this article is to identify the factors constituting caregiver burden on the informal caregivers of people with dementia living in the community. A systematic review of the four databases, including PubMed, PsycINFO, CINAHL and the Cochrane Library, was carried out to access relevant articles published between 2003 and 2012. Twenty-one articles met the inclusion criteria of this study. Behavioural problems or psychological symptoms were the primary factor of the person with dementia that is associated with caregiver burden. Caregiver socio-demographical factors and psychological factors were the two primary factors of the caregiver burden. Several results of this study were based on studies that had their own limitations. Furthermore, the concept of caregiver 'burden' was not clearly defined in some of the studies; instead, the term was broadly defined. Factors of caregiver burden in regard to people with dementia living in the community were clarified in this review study. By identifying all of the factors, healthcare professionals can deliver appropriate assistance to relieve caregiver burden and improve the quality of caregiving for people with dementia. It is important to identify the factors of the burden on the caregivers of people with dementia living in the community to prevent early nursing home placement, deterioration of caregiver's health and reduce the adverse health outcomes for care recipients. A health-related policy should be formulated to help informal caregivers receive more professional assistance. Training opportunities should be provided for family caregivers to reduce the impact of caregiving on the delivery of effective care. © 2015 International Council of

Caregiver burden and needs of dementia caregivers in Thailand: a cross-sectional study.

PubMed

Muangpaisan, Weerasak; Praditsuwan, Rungnirand; Assanasen, Jintana; Srinonprasert, Varalak; Assantachai, Prasert; Intalapaporn, Somboon; Chatthanawaree, Wichai; Dajpratham, Piyapat; Kuptniratsaikul, Vilai; Pisansalakij, Doojpratna

2010-05-01

To identify the burdens of Thai dementia caregivers and to determine the services that could support them in this function. The authors surveyed 88 dementia caregivers attending "Caregiver Day". The questionnaire contained Caregiver Burden Inventory. The answers range from "not at all descriptive" (zero) to "very descriptive" (4). The authors also explored baseline characteristics of caregivers and care recipients as well as caregiver's needs of a supporting system. There was an 82% response rate. Responses in time-dependence burden distributed almost equally in the five possible scales. In developmental and physical burden, caregivers rate scores mainly from 0-2. The scores in social and emotional burden ranged mainly between 0-1. Dependency in basic activities of daily living correlated with higher caregiver burden (odd ratio 7.48, 95% confidence interval 1.42-39.53, p = 0.02), while sex and kinship did not. The top three caregiver's needs were 1) caregiver education and training, 2) telephone line provided for caregiver consultation and 3) special system in a hospital provided for dementia patients to have rapid access to see a doctor. Caring for dementia patients can lead to high caregiver burden, particularly those caring for dependent patients. Physical and developmental burdens are affected more than social and emotional burdens. Culture, relationship quality and resources (coping, outlook on life and social support) might be contributing factors of this difference.

OC29 - Caregiver burden in childhood asthma.

PubMed

Ekim, Ayfer

2016-05-09

Theme: Parenting/parenthood. As delivering care is an inherent part of becoming parents, providing high-level care to the child with health problems might be a burden for the caregiver. This systematic review investigated the effects of caregiver burden of parents who are primarily responsible for the caring of children with asthma. PubMed, CINAHL, Web of Science and Scopus databases were searched for the studies published between 2000-2015. Key search terms used were 'caregiver', 'burden, 'childhood asthma' and 'parent'. A total of 23 studies were examined for this review. Providing care to the child with asthma affects parents as caregivers negatively. Caregivers of the children with asthma often experience anxiety, fear, disappointment, grief, physical distress and low quality of life as the outcomes of caregiving burden. It is absolutely crucial to determine caregiver burden risks and protective factors since wellness level of caregivers affect the asthma management practices and decisions.

Influence of caregiver personality on the burden of family caregivers of terminally ill cancer patients.

PubMed

Kim, Ha-Hyun; Kim, Seon-Young; Kim, Jae-Min; Kim, Sung-Wan; Shin, Il-Seon; Shim, Hyun-Jeong; Hwang, Jun-Eul; Chung, Ik-Joo; Yoon, Jin-Sang

2016-02-01

To determine the influence of caregiver personality and other factors on the burden of family caregivers of terminally ill cancer patients. We investigated a wide range of factors related to the patient-family caregiver dyad in a palliative care setting using a cross-sectional design. Caregiver burden was assessed using the seven-item short version of the Zarit Burden Interview (ZBI-7). Caregiver personality was assessed using the 10-item short version of the Big Five Inventory (BFI-10), which measures the following five personality dimensions: extroversion, agreeableness, conscientiousness, neuroticism, and openness. Patient- and caregiver-related sociodemographic and psychological factors were included in the analysis because of their potential association with caregiver burden. Clinical patient data were obtained from medical charts or by using other measures. Multivariate linear regression analysis was performed to identify the independent factors associated with caregiver burden. We analyzed 227 patient-family caregiver dyads. The multivariate analysis revealed that caregiver extroversion was protective against caregiver burden, whereas depressive symptoms in caregivers were related to increased burden. Neuroticism was positively correlated with caregiver burden, but this relationship was nonsignificant following adjustment for depressive symptoms. Patient-related factors were not significantly associated with caregiver burden. Evaluating caregiver personality traits could facilitate identification of individuals at greater risk of high burden. Furthermore, depression screening and treatment programs for caregivers in palliative care settings are required to decrease caregiver burden.

Depression, caregiver burden and social support among caregivers of retinoblastoma patients in China.

PubMed

Wang, Li-Juan; Zhong, Wen-Xiang; Ji, Xun-Da; Chen, Jiao

2016-10-01

The aim of this study is to examine the burden of family caregivers of patients with retinoblastoma in China and the relationships between depression, caregiver burden and social support. A descriptive and correlational survey was conducted with 117 Chinese family caregivers of outpatient patients with retinoblastoma from the Department of Ophthalmology of a tertiary hospital in Shanghai, China. Family caregivers of outpatient patients with retinoblastoma were asked to respond to four questionnaires including sociodemographic questionnaire, Becker Depression Inventory, Caregiver Burden Inventory and Social Support Rating Scale. The incidence of depression in this study was 51.3%; the average score for social support indicated moderate social support available to the caregivers, although their level of caregiver burden was heavy. Depression scores were significantly positively correlated with caregiver burden scores and significantly negatively correlated with the social support scores. Heavy caregiver burden was associated with lower monthly income, low subjective social support and less use of social support. © 2016 John Wiley & Sons Australia, Ltd.

Psychological distress and subjective burden of caregivers of people with mental illness: the role of affiliate stigma and face concern.

PubMed

Mak, Winnie W S; Cheung, Rebecca Y M

2012-06-01

The present study tested the mediating role of affiliate stigma on the relationships between face concern with psychological distress and subjective burden among caregivers of people with severe mental illnesses. One hundred and eight Chinese caregivers in Hong Kong were surveyed. Based on Baron and Kenny's (J Pers Soc Psychol 51:1173-1182, 1986) approach, affiliate stigma was found to serve as a partial mediator between face concern and caregiver distress and a full mediator between face concern and subjective burden. Cultural linkage of stigma and caregiver outcomes was identified, suggesting that researchers and practitioners should use a culturally sensitive approach to understand caregivers' experience and alleviate their stigma.

Role of Social Support in Predicting Caregiver Burden

PubMed Central

Rodakowski, Juleen; Skidmore, Elizabeth R.; Rogers, Joan C.; Schulz, Richard

2012-01-01

Objective To examine the unique contribution of social support to burden in caregivers of adults aging with spinal cord injuries (SCI). Design Secondary analyses of cross-sectional data from a large cohort of adults aging with SCI and their primary caregivers. Setting Multiple community locations in Pittsburgh, PA, and Miami, FL. Participants Caregivers of community-dwelling adults aging with SCI (n=173) were interviewed as part of a multisite randomized clinical trial. The mean age of caregivers was 53 years (SD=15) and of care-recipients 55 years (SD=13). Interventions Not applicable. Main Outcome Measures The primary outcome was caregiver burden measured with the Abridged Version of the Zarit Burden Interview. A hierarchical multiple regression analysis examined social supports (social integration, received social support, and negative social interactions) effect on burden in caregivers of adults aging while controlling for demographic characteristics and caregiving characteristics. Results After controlling for demographic characteristics and caregiving characteristics, social integration (β̂ =−.16, P<.05), received social support (β̂ =−.15, P<.05), and negative social interactions (β̂ =.21, P<.01) were significant independent predictors of caregiver burden. Conclusions Findings demonstrate that social support is an important factor associated with burden in caregivers of adults aging with SCI. Social support should be considered for assessments and interventions designed to identify and reduce caregiver burden. PMID:22824248

Subjective Caregiver Burden and Caregiver Satisfaction: The Role of Partner Relationship Quality and Reciprocity.

PubMed

Tough, Hannah; Brinkhof, Martin W; Siegrist, Johannes; Fekete, Christine

2017-10-01

To explore the effect of relationship quality and reciprocity in partnerships on subjective caregiver burden and caregiver satisfaction in partners of persons with a severe physical disability (spinal cord injury). Cross-sectional, observational. Community setting. Caregiving partners of persons with spinal cord injury (N=118). Not applicable. Subjective caregiver burden measured by the Zarit Burden Interview (short form) and caregiver satisfaction measured by a single item on feelings of satisfaction resulting from the caregiver role. Caregiving partners who rated their relationship quality as high encountered less subjective caregiver burden (β=-1.10; 95% confidence interval [CI], -1.47 to -0.72; P<.001) and more caregiver satisfaction (odds ratio [OR], 1.18; 95% CI, 1.01-1.45; P=.049). These associations persisted even after controlling for sociodemographic characteristics, lesion severity of the care receiver, and objective caregiver burden. Partners who indicated high reciprocity in their relationship to the care receiver indicated less subjective caregiver burden and more caregiver satisfaction when relationship quality was excluded from the final models; however, the effect of reciprocity on subjective burden (β=-.38; 95% CI, -3.71 to 2.95; P=.82) and caregiver satisfaction (OR, 1.21; 95% CI, 0.28-5.22; P=.80) disappeared when including relationship quality. Results highlight the importance of relationship quality as a target for couple interventions aimed at reducing subjective caregiver burden and increasing satisfaction in the caregiving role. Copyright © 2016 American Congress of Rehabilitation Medicine. Published by Elsevier Inc. All rights reserved.

Caregiver burden and prevalence of depression, anxiety and sleep disturbances in Alzheimer's disease caregivers in China.

PubMed

Liu, Shuai; Li, Chonghui; Shi, Zhihong; Wang, Xiaodan; Zhou, Yuying; Liu, Shuling; Liu, Jing; Yu, Tao; Ji, Yong

2017-05-01

To evaluate caregiver burden and factors that influence this burden among caregivers and patients with Alzheimer's disease in China. Long-term care can reduce the quality of life for caregivers and result in both mental and physical exhaustion. However, little is known about caregiver burden and associated factors in China. The study had a quantitative cross-sectional design. A total of 309 caregivers and their patients were included in the study. The patients' cognitive, psychological and functional status and their caregivers' burden, sleep quality and mental state were evaluated. Descriptive analyses, single-factor regression and stepwise factor regression were used to determine the effects of various factors on caregiver burden. Older females and spouses still play an important role in providing family care for those with dementia. Most of the caregivers were the sole full-time caregiver and had little time for themselves. Sleepiness was a common physical problem for caregivers, and some of them had moderate to severe depression and anxiety. A lower functional status of the patient was associated with higher caregiver burden. Poorer physical status compared with before caregiving began, lower life satisfaction, and higher degrees of depression and anxiety were associated with higher caregiver burden. Depression, anxiety and sleep problems are the main challenges that are faced by family caregivers of patients with Alzheimer's disease. Caregivers' functional status, lower life satisfaction, depression and anxiety influenced caregiver burden. Caregiver burden was related to the severity of the patient's dementia and the personal factors of the caregivers. To provide information about caregivers' current status while caring for patients with Alzheimer's disease and to understand caregiver burden and its related factors. Professionals who work with Alzheimer's disease should pay more attention to caregiver burden, especially those with mental and physical problems

Validity and reliability of Turkish Caregiver Burden Scale among family caregivers of haemodialysis patients.

PubMed

Cil Akinci, Ayse; Pinar, Rukiye

2014-02-01

To investigate the validity and reliability of the Caregiver Burden Scale in family members who provide primary care for haemodialysis patients. In Turkey, there is a need for a multi-dimensional instrument to evaluate the caregiver burden in people who provide care for patients with chronic diseases. A methodological study. The study sample consisted of 161 family members who provide primary care for haemodialysis patients. The forward-backward translation method was used to develop the Turkish Caregiver Burden Scale. The reliability was based on internal consistency investigated by Cronbach's alpha and item-total correlation. The factorial construct validity of the scale was tested with confirmatory factor analysis. By means of convergent and divergent validity, correlation between Caregiver Burden Scale and 36-Item Short Form Health Survey (SF-36) and correlation between Caregiver Burden Scale and the Maslach Burnout Scale were investigated. Cronbach's alpha and item-total correlations results suggested that there was good internal reliability. We found five underlying factors similar to original Scale's five-factor solution. The confirmatory factor analysis five-factor model represented an acceptable fit. Factor loadings were significant, with standardised loadings ranging from 0·43-0·81. By means of divergent validity, all sub-dimension scores and the total score of the Caregiver Burden Scale were negatively correlated with the SF-36, whereas there was a positive correlation with the emotional exhaustion and depersonalisation subscales of the Maslach Burnout Scale as expected. These results suggest that the Caregiver Burden Scale is a reliable and valid instrument which can be used with confidence in Turkish caregivers for haemodialysis patients to screen caregiver burden. The burden experienced by people who provide care for patients with chronic diseases can be evaluated with the Caregiver Burden Scale. Additionally, the Caregiver Burden Scale can be used

The mediating effect of caregiver burden on the caregivers' quality of life.

PubMed

Jeong, Yeon-Gyu; Jeong, Yeon-Jae; Kim, Won-Cheol; Kim, Jeong-Soo

2015-05-01

[Purpose] Quality of life (QoL) can be closely related to caregiver burden, which may be a potential mediating effect on the relationships among stroke patient caregivers. This study investigated the predictors of caregiver's QoL based on patient and caregiver characteristics, with caregiver burden as a mediator. [Methods] This study was conducted using surveys, a literature review, and interviews. Survey data were collected from 238 subjects, who were diagnosed with stroke, and their family caregivers from October 2013 to April 2014. [Results] Caregiver health status, income, spouses caring for patients, and duration of hospitalization were identified as significant predictors of caregivers' QoL with a mediating effect of caregiver burden. The time spent on caregiving per day and patient education level were the only direct predictors of caregivers' QoL. [Conclusion] The responsibility of caring for patients with stroke, in particular for a spouse, must be administered by means of a holistic family-centered rehabilitation program. In addition, financial support and availability of various health and social service programs must be comprehensively provided in order to maintain caregivers' well-being.

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

PubMed Central

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 < 0.0001), while formal 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 < 0.0001) and from relatives (β = −0.61, P = 0.001) were associated with lower caregiver burden, whereas formal 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 < 0.0001) and two or more supports (β = −1.55, P < 0.0001) had significantly lower burden. This association was not observed for formal 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

Assistive technologies in reducing caregiver burden among informal caregivers of older adults: a systematic review.

PubMed

Madara Marasinghe, Keshini

2016-01-01

The world population is rapidly ageing. As population age, the incidence of functional limitations increases, demanding higher levels of care from caregivers. Assistive technologies improve individuals' functioning, independence, well-being and quality of life. By increasing independence of older adults, assistive technologies decrease workloads required from informal caregivers. This review investigates, evaluates, and synthesises existing findings to examine whether and how assistive technologies reduce caregiver burden. Databases searched included MEDLINE, EMBASE, Scopus, and Cochrane Library. Three groups of keywords were combined: those relating to assistive technology, caregiver burden, and older adults. Two theories emerged from the analysis of study results. Caregivers reported that assistive technologies decrease caregiver burden. However, caregivers had concerns that assistive technologies could add to caregiver burden, highlighting the limitations of assistive technology. As suggested by a majority of the studies in this review, assistive technologies contribute to reducing caregiver burden among caregivers of older adults. Assistive technologies assisted caregivers by reducing time, levels of assistance and energy put towards caregiving, anxiety and fear, task difficulty, safety risk particularly for activities requiring physical assistance and increasing the independence of the users. Further research is required to better understand limitations of assistive technologies. Implications for Rehabilitation Support for informal caregivers of older adults need more attention and recognition. Assistive technologies can reduce caregiver burden among informal caregivers of older adults. Further research is required to better understand the effectiveness of assistive technologies in reducing caregiver burden as well as limitations and barriers associated with using assistive technologies.

Burden among male caregivers assisting people with multiple sclerosis.

PubMed

Buchanan, Robert J; Radin, Dagmar; Huang, Chunfeng

2010-12-01

Caregiver burden is a multidimensional response to many factors associated with providing assistance to people with multiple sclerosis (MS), including physical, psychological, emotional, and social stressors. The aim of this analysis was to identify the characteristics of male informal caregivers, the assistance provided, and the people receiving assistance who were associated with the burden of care. Data were collected from a national survey (which included the Mental Component Summary of the SF-8 Health Survey) of informal caregivers and analyzed using an ordered logistic regression model to identify characteristics associated with burden among male informal caregivers. Greater burden among male caregivers was associated with significantly greater hours per week providing assistance (P = 0.009) and significantly greater restriction on the caregiver's ability to perform daily activities (P < 0.001) due to assisting the person with MS. We found a strong association between the perception of burden and the mental health status of the male caregiver (P < 0.001). Our findings highlight the strong association of caregiver burden and the Mental Component Summary of the SF-8. Reducing burden may improve the mental health of informal caregivers. Health professionals treating either male caregivers or people with MS should be sensitive to the impact that providing assistance has on the mental health of informal caregivers. Copyright © 2010. Published by EM Inc USA.

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

PubMed

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

Association between components of family caregivers' sense of burden and types of paid care services provided in Japan.

PubMed

Nakagawa, Yoshinori; Nasu, Seigo

2011-08-01

The aim was to identify significant relationships between the 21 components of caregivers' sense of burden in the Zarit Burden Interview and specific paid care services provided in Japan's long-term care insurance system. We defined a service utilization level (SUL) that represents the amount of care services that caregivers were consuming. We calculated the ratios of people, among those with the same SUL value, whose sense of burden was weaker than a specific level. Finally, we conducted regression analysis and checked how this ratio varied compared to the change in SUL values. For 12 among 22 components, the use of paid care services in general were significantly and linearly related with a smaller number of people having the strongest sense of burden. Several pairs of burden components and care service types were identified indicating that the type of care services effectively alleviated that burden component. (1) Paid care services do relieve caregivers' sense of burden. (2) Measures to increase the ratio of people with the weakest sense of burden by encouraging the use of care services do not necessarily match those that decrease the ratio of people feeling the heaviest burden. (3) Policies that encourage caregivers to use more care services can be more effective if policy makers know which type of care service is related with a burden component.

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

PubMed

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.

Canadian Alzheimer's disease caregiver survey: baby-boomer caregivers and burden of care.

PubMed

Black, Sandra E; Gauthier, Serge; Dalziel, William; Keren, Ron; Correia, Jane; Hew, Huong; Binder, Carin

2010-08-01

Alzheimer's disease (AD) burdens not only the person, but also the person's caregiver(s). This burden has been linked to negative health effects for caregivers. To that end, a survey of Canadian caregivers of persons with AD/other dementias was conducted to investigate the social, physical, psychological and financial impact of AD and/or dementia-related conditions on caregivers' quality of life. A web-based survey, the Canadian Alzheimer's Disease Caregiver survey, was made available through the Canadian Alzheimer's Society website and 50plus.com, an internet portal for baby boomers (BB) (people aged 50 years or older), as well as through HarrisDecima Research's e-Vox panel. A total of 398 individuals completed the survey between 15 September and 5 November 2006. Of the 398 total respondents, 221 were identified as baby boomers who provided care to an individual with AD/dementia. Respondents identified several areas of burden of care. These included negative effects on emotional health (such as increased depression, more stress and greater fatigue), financial costs and a need to change a working situation (e.g. by retiring early, reducing work hours or refusing a promotion). Caregivers of persons with AD/related dementia face important social, physical, psychological and financial pressures. These negatively affect the quality of life of caregivers with a significant increased burden being placed on live-in caregivers versus caregivers who do not co-reside with their care recipients. Interventions that address these pressures will not only improve the health and well-being of caregivers, but likely also the care of persons with AD/dementia.

Spouse caregivers of Alzheimer patients: problem responses to caregiver burden.

PubMed

Croog, S H; Burleson, J A; Sudilovsky, A; Baume, R M

2006-03-01

This paper reports on comparisons of patterns of responses by 199 spouses of Alzheimer disease patients to stresses of functioning as caregivers. Focusing on gender and age of spouses, we examine effects of the total burden of caregiving and perceived patient problems on a set of emotional and social responses of caregivers. We also examine ways in which depressive symptoms and anxiety of spouse caregivers were associated with patterns of their responses to caregiving stresses. Total patient problem burden was most strongly associated positively with caregiver anger-resentment toward the patient, followed by caregiver concerns about personal time restriction and limitation of social life. Among individual areas of patient problems, emotional lability of the patient rather than cognitive impairment appeared strongest by far in affecting caregiver response measures. Negative impact of caregiving on their social life and associations appeared to have particularly marked effects on effects on caregiver depressive symptoms and anxiety scores. Spouse caregivers did not differ by age in clinically significant ways in their patterns of reaction to stresses of caregiving. The study suggests the importance of considering potential spouse caregiver reactions in such areas as anger and aggressive response to patients, the impact of feelings of social deprivation and personal sacrifice, as well as the implications of caregiving stresses for patient care and maintenance of family cohesion and quality of life.

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

PubMed

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.

Affiliate stigma and caregiver burden in intractable epilepsy.

PubMed

Hansen, Barbara; Szaflarski, Magdalena; Bebin, E Martina; Szaflarski, Jerzy P

2018-06-07

Intractable epilepsy can be challenging for patients and for their families. Disability rates in patients are high, causing tremendous physical and emotional burden on family caregivers. Additionally, caregivers may experience affiliate stigma, where they perceive and internalize the negative societal views of a condition and exhibit a psychological response. Affiliate stigma has been rarely studied in caregivers of those with intractable epilepsy. This study examined the relationship between affiliate stigma and the levels of burden experienced by caregivers, as well as how these levels may vary between those caring for children and adults. This cross-sectional approach used a self-administered survey offered to caregivers of family members with confirmed diagnoses of intractable epilepsy. We measured burden with the 30-item Carer's Assessment of Difficulties Index (CADI) and affiliate stigma with a six-item scale examining caregivers' perceptions of stigma directed toward themselves and their family members with epilepsy. Four nested ordinary-least-squares regression models were estimated using stigma scale scores to predict levels of perceived burden adjusting for demographic variables. Age of the patient with epilepsy was dichotomized (pediatric/adult) to assess a possible moderating effect of patient's age on the relationship between stigma and caregiver burden. Respondents (N = 136) were predominantly White (83%), female (75%), and married (69%), with an average age of 43 years. Patients with epilepsy were 52% male with ages ranging from 2 to 82 years. Each of the regression models yielded positive associations (p < 0.001) between perceived levels of caregiver burden and affiliate stigma. Additionally, the age of the family member with epilepsy moderated (p < 0.05) the effect, with the relationship stronger for caregivers of adults. In a highly select group of patients with refractory epilepsy recruited mostly from a cannabidiol (CBD) clinic

Changes in caregiver burden among informal caregivers of stroke patients in Mongolia.

PubMed

Chuluunbaatar, Enkhzaya; Pu, Christy; Chou, Yiing-Jenq

2017-05-01

Modern therapeutics and health care improvements prolong stroke patients' survival; however, the degree of disability remains high. Stroke survivors often require caregivers, particularly in the first year after the onset of the stroke. Longitudinal assessment of and factors associated with caregiver burden (CGB) among caregivers of stroke patients has been scarcely discussed. This study aimed to define the changes in CGB in the first year of caregiving among the caregivers of stroke patients and to identify associated factors. A prospective, multi-centered observational study was conducted in nine public hospitals in Mongolia. We used the Montgomery CGB Scale for assessing CGB, and repeated the assessment after 1 year. Stroke patient characteristics were included in the analyses. Multinomial logistic regressions were conducted to analyze changes in CGB. A paired t-test analysis revealed that demand burden increased (from 12.61 to 11.50, p = 0.034), whereas stress burden decreased (from 10.69 to 11.60, p = 0.016). Although objective burden decreased, the difference was not significant. Factors associated with these changes in CGB were the caregiver's marital status, the caregiver's relationship with the patient, financial difficulties, and the patient's sex and dependency. The information on factors predicting changes in CGB in the first year of caregiving provided in this study suggests that social or financial support can assist in reducing CGB among the caregivers of post-stroke patients.

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

PubMed

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

Predicting caregiver burden in general veterinary clients: Contribution of companion animal clinical signs and problem behaviors.

PubMed

Spitznagel, M B; Jacobson, D M; Cox, M D; Carlson, M D

2018-06-01

Caregiver burden, found in many clients with a chronically or terminally ill companion animal, has been linked to poorer psychosocial function in the client and greater utilization of non-billable veterinary services. To reduce client caregiver burden, its determinants must first be identified. This study examined if companion animal clinical signs and problem behaviors predict veterinary client burden within broader client- and patient-based risk factor models. Data were collected in two phases. Phase 1 included 238 companion animal owners, including those with a sick companion animal (n=119) and matched healthy controls (n=119) recruited online. Phase 2 was comprised of 602 small animal general veterinary hospital clients (n=95 with a sick dog or cat). Participants completed cross-sectional online assessments of caregiver burden, psychosocial resources (social support, active coping, self-mastery), and an item pool of companion animal clinical signs and problem behaviors. Several signs/behaviors correlated with burden, most prominently: weakness, appearing sad/depressed or anxious, appearing to have pain/discomfort, change in personality, frequent urination, and excessive sleeping/lethargy. Within patient-based risk factors, caregiver burden was predicted by frequency of the companion animal's signs/behaviors (P<.01). Within client-based factors, potentially modifiable factors of client reaction to the animal's signs/behaviors (P=.01), and client sense of control (P<.04) predicted burden. Understanding burden may enhance veterinarian-client communication, and is important due to potential downstream effects of client burden, such as higher workload for the veterinarian. Supporting the client's sense of control may help alleviate burden when amelioration of the companion animal's presentation is not feasible. Copyright © 2018 Elsevier Ltd. All rights reserved.

Factors associated with the caregiver burden among family caregivers of patients with heart failure in southwest China.

PubMed

Hu, Xiaolin; Dolansky, Mary A; Hu, Xiuying; Zhang, Fengying; Qu, Moying

2016-03-01

We investigated the status of caregiver burden and identified the factors related to caregiver burden among family caregivers of patients with heart failure in southwest China. A cross-sectional descriptive design with a convenience sample was adopted. Patient and family caregiver dyads (n = 226) in four hospitals in Chengdu, China were recruited from June 2013 to July 2014. The instruments used in this study included the Social Support Rating Scale, the Zarit Burden Interview, and the General Self-Efficacy Scale. Multivariate analysis was used to identify the factors associated with caregiver burden. Forty-four percent of the variance of the caregiver burden was explained by the payment type for treatment, monthly family income, relationship to the patient, caregivers' self-efficacy, and social support. The caregiver burden in southwest China was higher than studies conducted in developed areas. Specific to southwest China, the financial burden and insufficient resources are the main factors associated with caregiver burden. The results suggest that self-efficacy and social support in underdeveloped areas are potential areas for future intervention. © 2016 John Wiley & Sons Australia, Ltd.

Caregiver Burden in Frontotemporal Degeneration and Corticobasal Syndrome

PubMed Central

Armstrong, Nicole; Schupf, Nicole; Grafman, Jordan; Huey, Edward D.

2015-01-01

Background and Aims Caregiver stress is often a serious problem when caring for a patient with frontal lobe dysfunction. Methods A total of 102 caregivers of both patients with frontotemporal degeneration and corticobasal syndrome completed the Frontal Systems Behavior Scale (FrSBe) and the Zarit Burden Interview (ZBI). To analyze the association between apathy or disinhibition (or both) and caregiver burden, the effects of the total FrSBe and the apathy and disinhibition subscales of the FrSBE on the total ZBI score were assessed with logistic regressions and t tests. Results Total FrSBE score and the apathy FrSBE subscore predicted caregiver burden. Apathy occurred without disinhibition, and the two occurred together, but disinhibition without apathy was very rare. Conclusions Disinhibition without apathy occurred very rarely. Apathy was more associated with caregiver burden than disinhibition. PMID:24022248

Duchenne muscular dystrophy and caregiver burden: a systematic review.

PubMed

Landfeldt, Erik; Edström, Josefin; Buccella, Filippo; Kirschner, Janbernd; Lochmüller, Hanns

2018-06-14

To conduct a systematic literature review of caregiver burden in Duchenne muscular dystrophy (DMD). We searched Embase, Web of Science, and PubMed for full-text articles reporting results from studies of caregiver burden in DMD. We identified 483 unique publications. Of these, 450 were excluded after title and abstract screening, and 12 after full-text review. A total of 21 articles were included for data synthesis. Results encompassing more than 15 aspects of caregiver burden, investigated through surveys and/or interviews across 15 countries, were identified in the literature. Caregiving in DMD was frequently associated with impaired health-related quality of life, poor sleep quality, reduced family function, depression, pain, stress, sexual dysfunction, and/or lower self-esteem, as well as a considerable impact on work life and productivity. Providing informal care to a patient with DMD can be associated with a substantial burden. Yet, more research is needed to better understand the clinical implications of caregiving in DMD and the relationship between caregiver burden and the progression of the disease. Our data synthesis should be helpful in informing clinical and social support programmes directed to families caring for a patient with DMD. A substantial body of evidence describes caregiver burden in Duchenne muscular dystrophy. Little is known of the family burden beyond caregivers' self-assessments. © 2018 Mac Keith Press.

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

PubMed

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.

Trajectories of Multidimensional Caregiver Burden in Chinese Informal Caregivers for Dementia: Evidence from Exploratory and Confirmatory Factor Analysis of the Zarit Burden Interview.

PubMed

Li, Dan; Hu, Nan; Yu, Yueyi; Zhou, Aihong; Li, Fangyu; Jia, Jianping

2017-01-01

Despite its popularity, the latent structure of 22-item Zarit Burden Interview (ZBI) remains unclear. There has been no study exploring how caregiver multidimensional burden changed. The aim of the work was to validate the latent structure of ZBI and to investigate how multidimensional burden evolves with increasing global burden. We studied 1,132 dyads of dementia patients and their informal caregivers. The caregivers completed the ZBI and a questionnaire regarding caregiving. The total sample was randomly split into two equal subsamples. Exploratory factor analysis (EFA) was performed in the first subsample. In the second subsample, confirmatory factor analysis (CFA) was conducted to validate models generated from EFA. The mean of weighted factor score was calculated to assess the change of dimension burden against the increasing ZBI total score. The result of EFA and CFA supported that a five-factor structure, including role strain, personal strain, incompetency, dependency, and guilt, had the best goodness-of-fit. The trajectories of multidimensional burden suggested that three different dimensions (guilt, role strain and personal strain) became the main subtype of burden in sequence as the ZBI total score increased from mild to moderate. Factor dependency contributed prominently to the total burden in severe stage. The five-factor ZBI is a psychometrically robust measure for assessing multidimensional burden in Chinese caregivers. The changes of multidimensional burden have deepened our understanding of the psychological characteristics of caregiving beyond a single total score and may be useful for developing interventions to reduce caregiver burden.

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

PubMed

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.

Relationship Between Caregiving Burden and Anger Level in Primary Caregivers of Individuals With Chronic Mental Illness.

PubMed

Bademli, Kerime; Lök, Neslihan; Kılıc, Ayten Kaya

2017-06-01

The objective of this study was answer to the question: to what extent are the anger of the caregivers of patients diagnosed with schizophrenia and their perceived level of burden are related? The study is a descriptive and correlational study. The information form prepared by the researchers which questions the socio-demographic information of the individuals along with the "Caregiving Burden Inventory" which examines the burden of the caregiver as well as "Trait Anger and Anger Expression Style Scale (TAAES)" which determines the anger levels of the caregivers were used. The caregiving burdens of the caregivers according to the score averages were determined as 11.88±9.78 for time and dependency burden, 11.93±8.46 for developmental burden, 8.47±6.63 for physical burden, 5.61±5.26 for social burden, 6.29±5.25 for emotional burden and the total burden score was determined as 44.19±26.75. According to the trait anger and anger expression style scale score averages; trait anger was determined as 15.12±5.95, anger expression as 9.70±3.43, anger-in as 15.22±4.02, anger control as 28.05±5.57 and anger total score average as 68.11±9.97. According to the results obtained from this study, caregivers of schizophrenia patients experience developmental, physical, social and emotional burdens in addition to trait anger. The caregivers of schizophrenia patients need knowledge and support in order to control the burden and the anger they experience during the caregiving process. Copyright © 2016 Elsevier Inc. All rights reserved.

Caregiver burden mediates between caregiver's mental health condition and elder's behavioral problems among Japanese family caregivers.

PubMed

Honda, Ayumi; Abe, Yasuyo; Aoyagi, Kiyoshi; Honda, Sumihisa

2014-03-01

In Japan, the prevalence of depression has been reported to occur among 1 in 4 family caregivers. The purpose of this study was to investigate the self-rated burden associated with mental health conditions among caregivers. We studied 95 caregivers aged 38-87 years in a cross-sectional study. The General Health Questionnaire (GHQ-12) score of 4 or more was defined as poor mental health. The proportion of caregivers with poor mental health was 24%. Caregivers with a high GHQ-12 score had the number of caregiver burdens increased by 2.5-fold compared to those with a low GHQ-12 score (p = 0.001). The proportion of caregivers with a high GHQ-12 score was significantly higher with an increasing number of behavioral problems among care recipients (p = 0.003). A mediational model was used to identify the underlying mechanism of the relationship between the number of behavioral problems and poor mental health in caregivers. Consequently, we found that mental health conditions in caregivers were associated with both the number of caregiver burdens and behavioral problems among care recipients. It is vital to provide support not only to the caregivers but also to their elderly relatives, paying particular attention to early identification of poor mental health in caregivers so as to administer effective interventions, and to offer useful advice concerning how to deal with behavioral problems.

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

PubMed

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.

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

PubMed

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.

[The screen for caregiver burden of demented patients].

PubMed

Lubart, Emily; Segal, Refael; Pankin, Marianna; Madjar, Jack; Leibovitz, Arthur

2009-08-01

Most elderly individuals with dementia live in the community with the assistance of their caregivers, usually their family members. Their strength is essential for continuing home care and avoiding or postponing institutionalization. The screen for caregiver burden (SCB) is a 25 item scale, in use for the evaluation of caregivers of demented persons in the USA. A recent study in the USA showed that answers to 7 of those 25 questions, rapid screen for caregiver burden (RSCB), are sufficiently indicative and may replace and simplify the application of this questionnaire. In this study, the authors translated the SCB into Hebrew and tested it on 94 caregivers of demented elderly patients. The study results suggest that the shortened cluster of 7 items could also be used in Israel and is adequately indicative for the evaluation of the caregiver's burden.

The modifying role of caregiver burden on predictors of quality of life of caregivers of hospitalized chronic stroke patients.

PubMed

Jeong, Yeon-Gyu; Myong, Jun-Pyo; Koo, Jung-Wan

2015-10-01

Caregiver burden is an important predictor of quality of life (QoL) among caregivers of stroke patients. While caregiver burden and QoL might be closely related, caregiver burden seems also to be a potential modifier of the associations between patients' and caregivers' characteristics and caregivers' QoL. The purpose of this study was to investigate the effect of caregiver burden in caregivers of hospitalized chronic stroke patients and the predictors of caregivers' QoL by level of caregiver burden. A total of 238 patients and their caregivers were interviewed using questionnaires consisting of the Zarit Burden Interview and the Korean-version of the World Health Organization Quality of Life-BREF. Multiple hierarchical regression analyses were performed to determine the predictors of caregivers' QoL among caregivers stratified by median caregiver burden score (high/low). Caregiver burden had a modifying effect on caregivers' QoL. In caregivers with high burden, the patient characteristics of being unemployed and the caregiver characteristics of poor health status, lower income, and being a spouse were negative predictors of caregivers' QoL. In caregivers with low burden, the patient characteristics of being hospitalized for a longer duration and the caregiver characteristics of poor health status were negative predictors of caregivers' QoL (all ps < 0.05). This study found that in South Korea, more attention should be paid to spouses who are caring for hospitalized chronic stroke patients, particularly with regard to their health status and financial problems. Further studies are needed to examine the impact of factors not examined in the Korean cultural context. Copyright © 2015 Elsevier Inc. All rights reserved.

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

PubMed

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.

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

PubMed

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 < .01), fatigue (P < .01), and symptoms (P < .01) were significantly associated with higher 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.

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

PubMed

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.

Factors contributing to economic burden in lung cancer spousal caregivers.

PubMed

Kavanaugh, Melinda; Kramer, Betty J; Walsh, Matthew Cunningham; Trentham-Dietz, Amy

2015-06-01

The determinates of economic burden in lung cancer caregivers are poorly understood. Of particular interest is the role patient symptoms play in caregiver economic burden. Guided by a stress process conceptual framework, this study examined the predictors of economic burden reported by lung cancer spousal caregivers. Our study focused on the pathway of contextual and stressor variables leading to economic burden in lung cancer caregivers. Relying on survey data from 138 spouses, structural equation modeling was employed to examine the determinants of economic burden measured using the Family Impact Survey. Contextual variables included age, gender, education, and income; and stressor variables included patient physical and mental symptoms, as well as number of children in the home. A significant indirect path between age and economic distress through patient symptoms (p = 0.05) indicates younger spouses providing care for patients with more symptoms and reporting greater economic burden. Direct effects between contextual variables and economic burden revealed that caregivers with less education (p = 0.02) and those with more children at home (p = 0.01) reported more adverse economic outcomes. Numerous factors impact spousal caregivers' economic burden, including the presence of children at home, being a younger caregiver, and lower educational attainment by caregivers. Moreover, the direct effects between age and economic burden were not significant, supporting the clear role patient symptoms play in the path to economic burden in spousal caregivers. These results underscore the need for healthcare providers to address psychosocial factors when dealing with patients and families with lung cancer. Specifically, the results highlight the importance of addressing patient symptoms early before they threaten the family's economic well-being.

Caregiver burden of family members of persons living with HIV in Thailand

PubMed Central

Lee, Sung-Jae; Li, Li; Jiraphongsa, Chuleeporn; Rotheram-Borus, Mary J

2010-01-01

Caregivers of people living with HIV (PLH) in Thailand face tremendous caregiver burden. This study examines complex ways in which caregivers’ mental health affects their levels of caregiver burden. This study uses data from 409 caregivers of PLH in northern and north-eastern Thailand. Multiple regression models were used to examine the predictors of caregiver burden. Depression was significantly associated with caregiver burden (P < 0.0001) and being HIV positive (P = 0.015). Inverse associations were observed between depression and quality of life (P < 0.0001) and caregiver burden and quality of life (P = 0.004). Social support had direct positive association with caregiver’s quality of life (P < 0.0001). Our findings underscore the complex relationship between caregiver burden, depression and HIV-status. Interventions that address the caregiver burden are urgently needed. PMID:20158549

High levels of caregiver burden in Prader-Willi syndrome

PubMed Central

Farrar, Evan; Comtois, Katherine Anne; Strong, Theresa V.

2018-01-01

Objectives Prader-Willi syndrome (PWS) is a rare genetic neurodevelopmental disorder that is characterized by hyperphagia, developmental delay, incomplete sexual development, mild-to-moderate intellectual disability, and a variety of challenging behavioral and psychiatric symptoms. The characteristics of PWS can be difficult for caregivers to cope with and are likely to cause significant and long- term caregiver burden. The current study examined burden in 142 caregivers of children and adults with PWS living in the US using the Zarit Burden Interview (ZBI). The study aimed to measure the level of burden in caregivers of individuals with PWS, to explore the impact of PWS on caregiver quality of life, and to assess ZBI as an indicator of that impact. Results Caregivers participating in this study were predominantly mothers, 30–59 years old, non-Hispanic Whites, married or in a relationship, with an annual household income slightly distributed towards higher income. Nearly 90% of the caregiver`s children with PWS lived at home. Caregivers experienced high caregiver burden with an average ZBI score of 44.4 ± 15.4. ZBI scores were highest for caregivers of teenage and young adult individuals with PWS (49.2 ± 14.6 and 49.2 ± 14.1, respectively), while those caring for older adults (>30) and the youngest age group had lower scores (38.6 ±10.5 and 34.8 ±12.5, respectively). Caregivers reported that caring for a person with PWS negatively impacted their romantic relationship, ability to work, sleep, and mood. Whereas we did not find strong correlations between family income or level of help the caregiver receives and ZBI scores, the results showed significant correlations and a linear relationship between ZBI scores and caregiver depressed mood, feelings of anxiety, negative romantic relationship impact, as well as sleep and work disruption. Conclusions Our study reveals that PWS incurs high caregiver burden and impacts many aspects of the lives of caregiver. We

High levels of caregiver burden in Prader-Willi syndrome.

PubMed

Kayadjanian, Nathalie; Schwartz, Lauren; Farrar, Evan; Comtois, Katherine Anne; Strong, Theresa V

2018-01-01

Prader-Willi syndrome (PWS) is a rare genetic neurodevelopmental disorder that is characterized by hyperphagia, developmental delay, incomplete sexual development, mild-to-moderate intellectual disability, and a variety of challenging behavioral and psychiatric symptoms. The characteristics of PWS can be difficult for caregivers to cope with and are likely to cause significant and long- term caregiver burden. The current study examined burden in 142 caregivers of children and adults with PWS living in the US using the Zarit Burden Interview (ZBI). The study aimed to measure the level of burden in caregivers of individuals with PWS, to explore the impact of PWS on caregiver quality of life, and to assess ZBI as an indicator of that impact. Caregivers participating in this study were predominantly mothers, 30-59 years old, non-Hispanic Whites, married or in a relationship, with an annual household income slightly distributed towards higher income. Nearly 90% of the caregiver`s children with PWS lived at home. Caregivers experienced high caregiver burden with an average ZBI score of 44.4 ± 15.4. ZBI scores were highest for caregivers of teenage and young adult individuals with PWS (49.2 ± 14.6 and 49.2 ± 14.1, respectively), while those caring for older adults (>30) and the youngest age group had lower scores (38.6 ±10.5 and 34.8 ±12.5, respectively). Caregivers reported that caring for a person with PWS negatively impacted their romantic relationship, ability to work, sleep, and mood. Whereas we did not find strong correlations between family income or level of help the caregiver receives and ZBI scores, the results showed significant correlations and a linear relationship between ZBI scores and caregiver depressed mood, feelings of anxiety, negative romantic relationship impact, as well as sleep and work disruption. Our study reveals that PWS incurs high caregiver burden and impacts many aspects of the lives of caregiver. We identified the ZBI as a good

Targeting communication interventions to decrease oncology family caregiver burden

PubMed Central

Wittenberg-Lyles, Elaine; Goldsmith, Joy; Oliver, Debra Parker; Demiris, George; Rankin, Anna

2012-01-01

Objectives The goal of this paper was to articulate and describe family communication patterns that give shape to four types of family caregivers: Manager, Carrier, Partner, and Loner. Data Sources Case studies of oncology family caregivers and hospice patients were selected from data collected as part of a larger, randomized controlled trial aimed at assessing family participation in interdisciplinary team meetings. Conclusion Each caregiver type demonstrates essential communication traits with nurses and team members; an ability to recognize these caregiver types will facilitate targeted interventions to decrease family oncology caregiver burden. Implications for Nursing Practice By becoming familiar with caregiver types, oncology nurses will be better able to address family oncology caregiver burden and the conflicts arising from family communication challenges. With an understanding of family communication patterns and its impact on caregiver burden, nurses can aid patient, family, and team to best optimize all quality of life domains for patient as well as the lead family caregiver. PMID:23107184

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

PubMed

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.

Effectiveness of coping strategies intervention on caregiver burden among caregivers of elderly patients with dementia.

PubMed

Chen, Hui-Mei; Huang, Mei-Feng; Yeh, Yi-Chun; Huang, Wen-Hui; Chen, Cheng-Sheng

2015-03-01

Coping strategies are a potential way to improve interventions designed to manage the caregiver burden of dementia. The purpose of this study was to develop an intervention targeted towards improving coping strategies and to examine its effectiveness on reducing caregiver burden. A controlled study design was used. Fifty-seven caregivers of dementia patients were enrolled. Coping strategies were assessed with the Revised Ways of Coping Checklist (WCCL-R) and caregiver burden was assessed with the Chinese version of the Caregiver Burden Inventory. The participants were randomly divided into two groups. The intervention group was offered a series of five interventions in which problem-solving skills, knowledge of dementia, social resources, and emotional support were taught every 2 weeks, and the control group was telephoned every 2 weeks for the usual clinical management. Two weeks after the end of the intervention, we again administered the WCCL-R and the Caregiver Burden Inventory. Two-way repeated-measure anova was used to evaluate the changes in coping strategies and caregiver burden. Forty-six participants completed the study. No statistically significant differences were noted in the demographic data between the two groups. On the problem-focused coping subscale on the WCCL-R, the intervention group's mean score increased by 3.8 points, and the control group's decreased by 5.1 points (F = 7.988, P = 0.007). On the seeking social support coping subscale on the WCCL-R, the intervention group's mean score increased by 3.8 points, and the control group's decreased by 3.1 points (F = 4.462, P = 0.04). On the Caregiver Burden Inventory, the intervention group's mean score decreased by 7.2 points, and the control group's increased by 2.2 points (F = 6.155, P = 0.017). Psychosocial intervention can help caregivers to adopt more problem-focused and social support coping strategies, which are beneficial in terms of reducing the caregiver

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

PubMed

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.

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

PubMed Central

Iavarone, Alessandro; Ziello, Antonio Rosario; Pastore, Francesca; Fasanaro, Angiola Maria; Poderico, Carla

2014-01-01

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 strategies aimed to reshape the dysfunctional coping styles. PMID:25114532

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

PubMed Central

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

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

PubMed

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 <10% kcal from saturated fat; Block 98 Food Frequency Questionnaire) and physical activity (defined as ≥4 d/wk; Behavioral Risk Factor Surveillance System Survey) behaviors and 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.

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

PubMed

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].

PubMed

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.

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

PubMed

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.

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

PubMed

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 < 0.001). The mean person fit residual was estimated at -0.213 (SD: 1.235). The Person Separation Index and Cronbach's α were estimated at 0.902 and 0.914, respectively. Item dependency was low and we found no significant differential item functioning by country or sex. Our Rasch analysis shows that the Zarit Caregiver Burden 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

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

PubMed

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.

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

PubMed

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.

Association Between Traumatic Brain Injury-Related Brain Lesions and Long-term Caregiver Burden.

PubMed

Guevara, Andrea Brioschi; Demonet, Jean-Francois; Polejaeva, Elena; Knutson, Kristine M; Wassermann, Eric M; Grafman, Jordan; Krueger, Frank

2016-01-01

To investigate the association between traumatic brain injury (TBI)-related brain lesions and long-term caregiver burden in relation to dysexecutive syndrome. National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland. A total of 256 participants: 105 combat veterans with TBI, 23 healthy control combat veterans (HCv), and 128 caregivers. Caregiver burden assessed by the Zarit Burden Interview at 40 years postinjury. Participants with penetrating TBI were compared with HCv on perceived caregiver burden and neuropsychological assessment measures. Data of computed tomographic scans (overlay lesion maps of participants with a penetrating TBI whose caregivers have a significantly high burden) and behavioral statistical analyses were combined to identify brain lesions associated with caregiver burden. Burden was greater in caregivers of veterans with TBI than in caregivers of HCv. Caregivers of participants with lesions affecting cognitive and behavioral indicators of dysexecutive syndrome (ie, left dorsolateral prefrontal cortex and dorsal anterior cingulate cortex) showed greater long-term burden than caregivers of participants with lesions elsewhere in the brain. The TBI-related brain lesions have a lasting effect on long-term caregiver burden due to cognitive and behavioral factors associated with dysexecutive syndrome.

Measuring the Caregiver Burden of Caring for Community-Residing People with Alzheimer's Disease.

PubMed

Yu, Hongmei; Wang, Xiaocheng; He, Runlian; Liang, Ruifeng; Zhou, Liye

2015-01-01

To assess the direct and indirect effects of patient or caregiver factors on caregiver burden of caring for community-residing people with mild Alzheimer's disease (AD). We conducted a cross-sectional study of patients diagnosed with AD from two hospitals and three communities in Taiyuan, China and their caregivers. For this survey, 200 patients with mild AD and their caregivers were selected. Caregivers were asked to provide sociodemographic information including age, gender, relationship with the patient, level of education, and number of contact hours per week with the patient. Caregiver burden was assessed using the Caregivers Burden Inventory. The caregivers also completed other measures including the Positive Aspects of Caregiving, the Family Adaptation, Partnership, Growth, Affection, and Resolve, and the Social Support Rating Scale. The patients with AD completed the Montreal Cognitive Assessment; their caregivers completed the Activities of Daily Living Scale and a questionnaire about the patients' Behavioral and Psychological symptoms of Dementia. The main outcome in this study was caregiver burden. The care receivers' level of cognitive function, physical function, and behavioral problems were treated as original stress; the primary appraisal variable was measured as the number of hours of caregiving in the previous week reported by the caregiver. Mediator variables included perceived social support, family function, and caregiving experience. Path analysis was used to build the interrelationship among caregiver burden and patient or caregiver factors. A lower level of cognitive function in patients (r = -0.28, p<0.001) and longer hours of caregiving (r = 0.17, p = 0.019) were related to increased caregiver burden. Greater social support (r = -0.23, p<0.001), family function (r = -0.17, p = 0.015) and caregiving experience (r = -0.16, p = 0.012) were related to decreased caregiver burden. Social support (r = 0.16, p = 0.040) and family function (r = 0

Assessment of caregiver burden of patients receiving dialysis treatment in Rawalpindi.

PubMed

Usman Shah, Hassan Bin; Atif, Iffat; Rashid, Farah; Babar, Muhammad Waleed; Arshad, Faizan; Qamar, Waqar; Khan, Owais Ahmed; Qadir, Muhammad Luqman

2017-10-01

To determine the burden on the caregivers of patients receiving dialysis treatment. This cross-sectional study was carried out in four different dialysis centres of Rawalpindi, Pakistan, from June 1 to December1, 2015, and comprised attendants of patients receiving dialysis. The data was collected from the attendants of patients receiving dialysis, and caregiver burden was measured using the Zarit Burden Interview questionnaire. SPSS 22 was used for data analysis. Of the 164 subjects, 97(59%) were females. The majority of caregivers reported stress for caring (2.28±1.31), patients asking for more help than needed (2.14±1.13), health problems (1.03±1.11), financial constraints (1.70±1.15) and little time for self-care (2.15±1.21). Besides, 107(65%) caregivers perceived the burden of their patients as mild to moderate. A positive correlation was found between the duration of a person on dialysis, daily hours of care-giving and the total burden score of his/her caregiver (p<0.05 each). Care-giving can create enormous burdens on caregivers, affecting their physical and psychological health.

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

PubMed

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.

Frontal lobe function in elderly patients with Alzheimer's disease and caregiver burden.

PubMed

Hashimoto, Akiko; Matsuoka, Kiwamu; Yasuno, Fumihiko; Takahashi, Masato; Iida, Junzo; Jikumaru, Kiyoko; Kishimoto, Toshifumi

2017-07-01

Understanding of the relationship between caregiver burden and the degree of behavioural deficits in patients with Alzheimer's disease (AD) is relatively limited. Therefore, it is worthwhile to examine the correlations between the various relevant factors to improve the efficacy of care for patients with AD. The aim of this study was to investigate the specific contributions of frontal lobe dysfunction in AD patients to caregiver burden, while controlling for other predictor variables. Participants included 30 pairs of caregivers and patients with AD. The Zarit Burden Interview and Frontal Assessment Battery were used to measure the caregiver burden and patients' frontal lobe function, respectively. To investigate the effects of frontal lobe dysfunction on caregiver burden, hierarchical regression equations with steps incorporating additional predictor variables were fitted. We also performed a correlation analysis between the individual subdomains of the Zarit Burden Interview and the predictor variables. Our study suggests that the degree of frontal lobe dysfunction in AD patients predicts their caregiver burden, when other factors of daily functional limitations and neuropsychiatric symptoms are controlled. Daily functional limitations and neuropsychiatric symptoms affected caregivers' psychosocial burden, whereas frontal lobe dysfunction affected caregivers' burden due to the increase in the dependency of the patients. Our findings indicate that to ameliorate the disabilities of patients and reduce caregiver burden, there is a need for interventions that focus on psychosocial burdens, as shown in previous studies, as well as on excessive dependency due to frontal lobe dysfunction. © 2017 Japanese Psychogeriatric Society.

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

PubMed

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.

Association between cultural factors and the caregiving burden for Chinese spousal caregivers of frail elderly in Hong Kong.

PubMed

Chan, Christopher L F; Chui, Ernest W T

2011-05-01

The aim of this study was to explore the relationship between cultural factors and the caregiving burden of Chinese spousal caregivers who provided care to their frail partners. A sample consisting of 102 Chinese caregivers for frail elderly spouses was recruited from home care services across various districts in Hong Kong. Structured interviews were conducted with the participants in their homes, measuring demographics, the functional status of the spouse, the degree of assistance required in daily care, perceived health, the caregiver's orientation to traditional Chinese family values, social support, coping, and caregiver burden. Findings of regression analysis indicated that gender, activities of daily living (ADL) status, orientation to traditional Chinese family values, passive coping, and marital satisfaction associated with caregiver burden. Being female, having lower functioning in ADL or a strong orientation toward traditional Chinese family values, employing the strategies of passive coping more frequent, or experiencing a low degree of marital satisfaction were associated with high levels of caregiver burden. These findings provided a basis for developing appropriate interventions to minimize the caregiver burden of spousal family caregivers.

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

PubMed

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 < .001), emergency room (ER) visits (P < .001), and hospitalizations (P = .001) than noncaregivers, adjusting for covariates. After adjustments, MS caregivers had greater activity impairment (P = .044), more ER visits (P = .017), and more hospitalizations (P = .008) than AD caregivers. Significant work 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.

Burden and depression in the caregivers of blind patients in India.

PubMed

Braich, Puneet S; Lal, Vikram; Hollands, Simon; Almeida, David R

2012-02-01

Several studies have examined the rates of depression in caregivers of patients with debilitating neurologic diseases. This study describes the degree of burden and the prevalence of depression among individuals caring for legally blind patients. To the best of our knowledge, no prior studies in the ophthalmic literature have reported this relationship. Clinic-based, cross-sectional study. We included 522 individuals in Rampur, India, providing care to their close family relatives who were legally blind. Visual acuities varied from 20/200 in the best eye, to no light perception (NLP) in each eye. Several surveys were completed by the caregivers of patients whose sole impairment was visual, allowing us to quantitatively and selectively assess burden and depression among caregivers of blind patients. The Burden Index of Caregivers (BIC) was used to measure care burden and the Center for Epidemiologic Studies Depression scale was applied to determine depression. Caregivers of patients with NLP experience higher burden than caregivers of patients with lesser degrees of blindness. Daily hours spent on close supervision and the intensity of care-giving were the definitive factors linked to high BIC scores (P<0.01). The prevalence of caregiver depression increased with degree of visual impairment from 16% in the 20/200 group to 48% in the NLP cohort (P<0.01). Independently related variables for depression in caregivers were daily hours required for close supervision of the patient, intensity of care-giving, low household income, and the caregiver being the parent of a blind adult child (P<0.01). Severity of blindness in patients directly correlated with burden in caregivers. More severe forms of blindness meant patients require more help with their activities of daily living and additional hours of close supervision per day, both of which increase care burden. The same 2 factors also increase risk of caregiver depression along with low household income and the caregiver

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

PubMed

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

Emotional distress and burden among caregivers of children with oncological/hematological disorders.

PubMed

Edmond, Sara N; Graves, Patricia E; Whiting, Sara E; Karlson, Cynthia W

2016-06-01

Caring for children with oncological and hematological disorders may lead to caregiver emotional distress and caregiver burden; however, little work has examined the relationship between children's symptoms and caregiver's distress and burden. This study used self-report survey data from caregivers (N = 96) and a cross-sectional design to examine correlates of caregiver emotional distress and burden. Data collected included caregiver and child demographic data, child symptoms (i.e., sleep problems, pain, and emotional/behavioral problems), caregiver emotional distress, and caregiver burden. Multiple linear regression found that parent reported financial difficulty (β = 0.29, t = 3.13, p = .003), greater child sleep problems (β = 0.29 t = 2.81, p = .007), greater child pain (β = 0.33 t = 3.48, p = .001), and greater child emotional/behavioral problems (β = 0.27, t = 2.71, p = .009) were all related to higher levels of caregiver emotional distress. Only financial difficulties (β = -0.35, t = -2.03, p = .04) and child pain (β = -0.30, t = -2.33, p = .02) were related to caregiver burden. Child symptoms may play an important role in the development of caregiver distress and caregiver burden; future research should utilize longitudinal designs to examine temporal and casual relationships. (PsycINFO Database Record (c) 2016 APA, all rights reserved).

Economic Burden for Informal Caregivers of Lung and Colorectal Cancer Patients

PubMed Central

Ramsey, Scott D.; Hornbrook, Mark C.; Atienza, Audie A.; van Ryn, Michelle

2010-01-01

Background. Informal care provides many benefits to cancer patients, but can be costly to caregivers. This study quantified the economic burden for informal caregivers of lung cancer (LC) and colorectal cancer (CRC) patients, examining differences by cancer type, phase of disease, stage at diagnosis, patient age, and relationship. Methods. A cross-sectional survey of caregivers of LC and CRC patients participating in the Share Thoughts on Care survey was conducted. Economic burden was calculated using the opportunity cost of caregiver time, the value of work hours lost, and out-of-pocket expenditures. Factors associated with economic burden to caregivers were modeled using fixed-effects generalized least squares estimation. Results. Informal caregivers (1,629) completed mailed surveys. Of these, 663, 822, and 144 were surveyed during the patient's initial phase (first year after diagnosis, not within 6 months of death), continuing phase (after 1 year, not within 6 months of death), and terminal phase (within 6 months of death) of disease, respectively. The accumulated economic burdens for caregivers were $7,028, $19,701, and $14,234 for those evaluated during the patient's initial phase, continuing phase, and terminal phase of disease, respectively. Economic burden was higher for caregivers of LC patients than CRC patients (p = .044) and for caregivers of patients diagnosed at stage 4 versus stage 1 (p = .001). Spouses faced higher economic burden than other relatives (p = .000) or friends (p = .000). Conclusions. Economic burden for informal caregivers of LC and CRC patients is substantial and should be included in estimates of the societal cost of cancer care. PMID:20667966

Caregiver burden in Alzheimer's disease patients in Spain.

PubMed

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.

Burden and Depressive Symptoms Associated with Adult-Child Caregiving for Individuals with Heart Failure

PubMed Central

Zincir, Serkan; Aydin Sunbul, Esra; Oguz, Mustafa; Feriha Cengiz, Fatma; Durmus, Erdal; Kivrak, Tarik; Sari, Ibrahim

2014-01-01

Background. The primary purpose of this study was to investigate adult-child caregiver burden in heart failure (HF) patients. Secondary purpose of the study was to identify the possible influencing factors for caregiver burden and depressive symptoms in a young adult-child caregiver group. Methods. A total of 138 adult-child caregivers and 138 patients with HF participated in this study. Caregivers' burden, depressive symptoms, and anxiety levels were assessed by using Zarit Caregiver Burden Scale (ZCBS), Beck Depression Inventory, and State-Trait Anxiety Inventory, respectively. Results. The mean ZCBS scores of the female caregivers were significantly higher than male caregivers. Approximately one-third of the adult-child caregivers had at least mild depressive symptoms. Caregivers with higher depressive symptoms had higher levels of caregiver burden. There were positive correlations between caregiving time, severity of depressive symptoms, and perceived caregiver burden. There was a negative correlation between education level of caregivers and perceived caregiver burden. Age, socioeconomic level, and marital status of patients were affecting factors for depressive symptoms in caregivers. Among caregiver characteristics, gender, marital status, and ZCBS scores seem to influence the depression in caregivers. Conclusions. The study findings suggest significant levels of burden and depressive symptoms even in adult-child caregivers of HF patients. PMID:25431793

Caregivers' burden and depressive symptoms: the moderational role of attachment orientations.

PubMed

Vilchinsky, Noa; Dekel, Rachel; Revenson, Tracey A; Liberman, Gabriel; Mosseri, Morris

2015-03-01

The current study explored whether attachment orientations moderate the associations between caregiver burden and depressive symptoms among women coping with their partners' first time acute coronary syndrome. The association between burden and depression was hypothesized to be stronger among caregivers high on anxious attachment than among caregivers low on this dimension. In addition, the association between burden and depressive symptoms was hypothesized to be weaker among caregivers higher on avoidant attachment than among those lower on this dimension. The sample consisted of 111 female caregivers of male patients admitted to the cardiac care unit of a hospital in Israel. Caregivers completed a measure of attachment orientations during patients' hospitalization (baseline). Caregiver burden was measured 1 month later. Depressive symptoms were measured at baseline and again at 6-month follow-up. Structural equation modeling was used to test the moderational models. The association between caregiver burden and depressive symptoms at follow-up was moderated by attachment-related anxiety but not attachment-related avoidance. Congruent with predictions, a stronger association between caregiver burden and depressive symptoms occurred for caregivers with greater (vs. lower) attachment anxiety. The findings shed light on the possible dynamics among attachment orientations and affect regulation when coping with one's partner's illness. The findings are discussed in light of Pietromonaco, Uchino, and Dunkel Schetter's (2013) model of integrating attachment into health psychology research. PsycINFO Database Record (c) 2015 APA, all rights reserved.

A path analysis of patient dependence and caregiver burden in Alzheimer's disease.

PubMed

Garre-Olmo, J; Vilalta-Franch, J; Calvó-Perxas, L; Turró-Garriga, O; Conde-Sala, L; López-Pousa, S

2016-07-01

The concept of dependence has been proposed as an integrative measure to assess the progression of Alzheimer's disease (AD).This study aimed to investigate the association of patient's dependence level with the caregiver burden within a general theoretical model that includes other well-established determinants. Observational and cross-sectional multicenter study. The sample consisted of patients with AD recruited in outpatient consultation offices by a convenience sampling procedure stratified by dementia severity. Cognitive and functional status, behavioral disturbances, dependence level, medical comorbidities, and caregiver burden were assessed by using standardized instruments. A path analysis was used to test the hypothesized relationships between the caregiver burden and its determinants, including the level of dependence. The sample consisted of 306 patients (33.3% mild, 35.9% moderate, 30.7% severe), the mean age was 78.5 years (SD = 7.8), and 66.2% were women. The model fit was acceptable and explained 29% of the caregiver burden variance. Primary stressors were the level of dependence and the distress related to behavioral disturbances. Caregiver's age, gender, and co-residence with the patient were the contextual factors related to caregiver burden. The job status of the caregiver was a significant secondary stressor, functional disability was indirectly associated with caregiver burden via dependence, and frequency of behavioral disturbances was indirectly associated with the caregiver burden via distress. Dependence was, apart from behavioral disturbances, the most important primary stressor directly related to caregiver burden irrespective of the disease severity.

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

PubMed

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

PubMed

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.

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

PubMed

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 < .001). Family caregiver burden were also higher in depressive groups (p < .001). Among patients only the depression was negatively correlated with PSS (p < .001, r = -2.97). Presence of depression (p < .001, r = 0.381) was positively correlated and family caregiver role was negatively correlated (p < .001, r = -0.208) with 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.

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

PubMed

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.

Measuring the Caregiver Burden of Caring for Community-Residing People with Alzheimer’s Disease

PubMed Central

Yu, Hongmei; Wang, Xiaocheng; He, Runlian; Liang, Ruifeng; Zhou, Liye

2015-01-01

Objectives To assess the direct and indirect effects of patient or caregiver factors on caregiver burden of caring for community-residing people with mild Alzheimer’s disease (AD). Methods We conducted a cross-sectional study of patients diagnosed with AD from two hospitals and three communities in Taiyuan, China and their caregivers. For this survey, 200 patients with mild AD and their caregivers were selected. Caregivers were asked to provide sociodemographic information including age, gender, relationship with the patient, level of education, and number of contact hours per week with the patient. Caregiver burden was assessed using the Caregivers Burden Inventory. The caregivers also completed other measures including the Positive Aspects of Caregiving, the Family Adaptation, Partnership, Growth, Affection, and Resolve, and the Social Support Rating Scale. The patients with AD completed the Montreal Cognitive Assessment; their caregivers completed the Activities of Daily Living Scale and a questionnaire about the patients’ Behavioral and Psychological symptoms of Dementia. The main outcome in this study was caregiver burden. The care receivers’ level of cognitive function, physical function, and behavioral problems were treated as original stress; the primary appraisal variable was measured as the number of hours of caregiving in the previous week reported by the caregiver. Mediator variables included perceived social support, family function, and caregiving experience. Path analysis was used to build the interrelationship among caregiver burden and patient or caregiver factors. Results A lower level of cognitive function in patients (r = −0.28, p<0.001) and longer hours of caregiving (r = 0.17, p = 0.019) were related to increased caregiver burden. Greater social support (r = −0.23, p<0.001), family function (r = −0.17, p = 0.015) and caregiving experience (r = −0.16, p = 0.012) were related to decreased caregiver burden. Social support (r = 0

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

PubMed

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.

Statistical Modeling of Caregiver Burden and Distress among Informal Caregivers of Individuals with Amyotrophic Lateral Sclerosis, Alzheimer's Disease, and Cancer

ERIC Educational Resources Information Center

Cumming, John McClure

2011-01-01

Caregiver burden and distress have been associated with informal caregivers. Research findings on the specific aspects of the caregiving role that influence burden are mixed. Factors such as amount of time per day giving care and specific characteristics about the disease progression have been linked to caregiver burden and distress. Other…

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

PubMed

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 < 0.05). 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. 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.

Burden and depression in primary caregivers of persons with visual impairment.

PubMed

Khare, Shubhank; Rohatgi, Jolly; Bhatia, Manjeet Singh; Dhaliwal, Upreet

2016-08-01

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. To assess burden and depression in persons caring for blind individuals. This was a cross-sectional study carried out in the outpatient department of a tertiary-level teaching hospital in New Delhi. 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 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. 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 regression, burden predicted depression (r = 0.557; P < 0.001). Caregivers merit community support

Burden and depression in primary caregivers of persons with visual impairment

PubMed Central

Khare, Shubhank; Rohatgi, Jolly; Bhatia, Manjeet Singh; Dhaliwal, Upreet

2016-01-01

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 regression

Burden on Family Caregivers Caring for Patients with Schizophrenia

PubMed Central

Shamsaei, Farshid; Cheraghi, Fatemeh; Bashirian, Saied

2015-01-01

Objective: The aim of this study ‎was to determine the prevalence ‎of the burden reported by family ‎caregivers of Patients with ‎schizophrenia.‎ Methods: This cross sectional ‎study involved face-to-face ‎interviews with family caregivers ‎of patients with schizophrenia. ‎Using convenience sampling, ‎‎225 caregivers were selected ‎from Farshchian psychiatry ‎Hospital in Hamadan, Iran from ‎July to September 2012. ‎Measures included patients and ‎caregivers’ demographic ‎variables and caregivers’ burden ‎using the Zarit Burden Interview ‎‎(ZBI). Data were analyzed by ‎SPSS-18 with Pearson ‎correlation and t-test.‎ Results: Using the ZBI, we found ‎that 7.6% of the caregivers ‎experienced “no to low” burden, ‎‎23.5% “mild to moderate”, 41.8% ‎‎“moderate to severe” and 27.1% ‎‎“severe” burden. The mean ‎average score of the responses ‎to ZBI was 51.73 (SD: ± 18.23). ‎The level of burden experienced ‎was significantly associated with ‎age, gender, and educational ‎level, relation to care recipient, ‎caregiving duration and duration ‎of schizophrenia illness.‎ Conclusion: ‎ ‏ ‏Mental health ‎professionals need to develop ‎more innovative programs for ‎families of schizophrenic ‎patients. Furthermore, as a ‎replacement for supporting the ‎families and easing their ‎burdens, it may be more ‎effective to include them in the ‎health care team by assigning ‎specific tasks and providing the ‎required resources to them to ‎perform such tasks. ‎ PMID:27006669

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

PubMed

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.

PubMed

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

PubMed Central

2011-01-01

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 support the importance of a dyadic

Burden Experience of Caregivers of Acute Lymphoblastic Leukemia: Impact of Coping and Spirituality

PubMed Central

Chivukula, Usha; Kota, Sirisha; Nandinee, Durgesh

2018-01-01

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 and

Neuropsychiatric symptoms as the main determinant of caregiver burden in Alzheimer’s disease

PubMed Central

Kochhann, Renata; Borba, Ericksen; Cerveira, Maria Otília; Onyszko, Diego; de Jesus, Alyne; Forster, Letícia; Franciscatto, Luisa; Godinho, Cláudia; Camozzato, Ana Luiza; Chaves, Márcia Lorena F.

2011-01-01

Caregiver burden is common in Alzheimer’s disease (AD), decreasing the quality of life among caregivers and patients. Projections of aging and aging-related diseases such as AD in developing countries justify additional data about this issue because people living in these countries have shown similarly high levels of caregiver strain as in the developed world. Objective The aim of this study was to analyze the association of AD caregivers’ burden with patients’ neuropsychiatric symptoms (NPS), cognitive status, severity of dementia, functional capacity, caregiver sociodemographic characteristics, and the characteristics of care provided by caregivers. Methods A cross-sectional study was conducted in a sample of 39 consecutive AD patients and their primary caregivers. NPS were evaluated using the Neuropsychiatric Inventory (NPI). Severity of dementia was assessed with the Clinical Dementia Rating (CDR) scale. Functional capacity was assessed using the Katz and Lawton scales. The burden level was rated using the Burden Interview (BI). Sociodemographic characteristics of caregivers and the characteristics of care provided by them were evaluated. The Mann-Whitney U-test, Kruskal-Wallis test and Spearman’s rho coefficient were performed. Results The BI had a moderate correlation with NPI intensity (rho=0.563), p<001. Female caregivers reported a greater level of burden (p=0.031) than male caregivers. The other variables were not significantly associated to caregiver burden. Conclusion NPS were the main determinant of burden in primary caregivers of AD patients. This result underscores the need for prevention and treatment of these symptoms. Sex also had an effect on caregiver burden, but the small male sample in this study precludes the generalization of this finding. PMID:29213745

Burden Among Caregivers of Children Living with Human Immunodeficiency Virus in North India

PubMed Central

Chauhan, Ramesh Chand; Rai, Sanjay Kumar; Kant, Shashi; Lodha, Rakesh; Kumar, Nand; Singh, Neelima

2016-01-01

Background: Due to wider access to and free antiretroviral therapy (ART) program, the number of children dying due to acquired immune deficiency syndrome (AIDS)-related causes has declined and the nature and duration of human immunodeficiency virus (HIV)/AIDS caregiving has also dramatically altered. The care of children living with HIV/AIDS (CLHA) places a significant additional burden on the caregivers. Aims: This study was conducted to assess the perceived burden among caregivers of children living with HIV in North India. Materials and Methods: A hospital-based cross-sectional study among 156 CLHA-caregiver dyads in North India was conducted from June 2010 to May 2011. Data were collected by using a pretested structured interview schedule. The caregiver burden was measured with a 36-item scale adapted from Burden Assessment Schedule of Schizophrenia Research Foundation (BASS). Child characteristics, caregiver characteristics, caregiving burden, the knowledge of caregivers, and issues related to health care, nutrition, education, and psychological aspects were studied. Results: Caregivers had a mean age of 35.9 ± 10.2 years. Women accounted for over three-fourth (76.9%) of the caregivers. Nearly two-third of them (65.4%) reported as living with HIV. The mean caregiver burden score was 68.7 ± 2.9. A majority of the caregivers reported either low or moderate burden. Standardized percentage score was high in the domains of physical and mental health, external support, patients’ behavior, and caregivers’ strategy and seemed to be comparatively less in the other domains such as support of the patient and taking responsibility. Conclusions: Caring of children is a universal practice but there is a need of special care for children living with HIV. The majority of caregivers who were usually the mothers perceived the burden and need to be assisted in caring for the child. Stigma and discrimination with HIV infection further increased the burden as caregivers did

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

ERIC Educational Resources Information Center

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,…

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

PubMed

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 (P<0.05) the level of burden and strains experienced by the informal caregivers: closer intimacy with the stroke survivors, fewer number of caregivers for the stroke patient, longer duration since the onset of stroke and more hours of caregiving per day. Caregiving had negative significant influence (P<0.05) on the social, emotional, health and financial 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.

Video Game Addiction and Life Style Changes: Implications for Caregivers Burden.

PubMed

Sharma, Manoj Kumar

2016-01-01

Limitation of available information on caregiver perspective on managing the users excessive use of technology. The present case series explore the caregiver burden related to users addictive use of video game. The users and caregivers approached the service of healthy use of technology (SHUT clinic) for management. They were assessed using Griffith criteria for video game; General Health questionnaire and family burden interview schedule. It demonstrate the addictive use of video game and its impact on users life style and the presence of psychiatric distress/family burden in the caregivers. Caregivers also reported presence of disturbance in psychosocial domains and helplessness to manage the excessive use. It has implications for building support group and service to handle parents' distress and enabling them to handle the dysfunction in users.

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

PubMed

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.

Stress and burden among caregivers of patients with Lewy body dementia.

PubMed

Leggett, Amanda N; Zarit, Steven; Taylor, Angela; Galvin, James E

2011-02-01

Patients with Lewy body dementia (LBD) may present a unique set of symptoms and challenges to family caregivers compared with other types of dementia. Prominent difficulties include motor impairment, activities of daily living (ADLs) disability, recurrent behavioral and emotional problems (BEPs), and diagnostic difficulties. These problems are likely to affect caregivers' subjective burden. The present study used data from an Internet survey conducted by the Lewy Body Dementia Association. Respondents were 611 people who indicated that they were currently involved in the care of their relative with LBD. Subjective burden was assessed with a 12-item short version of the Zarit Burden Interview. A factor analysis revealed 3 dimensions of burden: role strain, personal strain, and worry about performance. Multiple regressions were used to examine predictors of these dimensions. BEPs, ADL disability, isolation, caregiver age, and patient gender were significant predictors of specific factors. Falls, formal service use, difficulty finding a physician, and evaluation of the physician had no significant associations with burden. These findings highlight burden experiences by caregivers of patients with LBD and the impact of BEPs, ADL assistance, and awareness about LBD on subjective burden.

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

PubMed

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.

Burden Assessment, Psychiatric Morbidity, and Their Correlates in Caregivers of Patients with Intellectual Disability.

PubMed

Bhatia, M S; Srivastava, S; Gautam, P; Saha, R; Kaur, J

2015-12-01

Intellectual disability in a child places great stress on a family and caregiver and this leads to significant socio-occupational dysfunction and impaired quality of life for caregivers. This study aimed to assess socio-demographic characteristics, burden, and psychiatric morbidity of the caregivers of persons with intellectual disability, as well as to determine the variables that correlated with burden and psychiatric morbidity. An observational study was carried out in an outpatient psychiatric unit of a tertiary care teaching hospital in India from October 2014 to April 2015. A total of 100 caregivers of intellectually impaired individuals were assessed for burden and psychiatric morbidity. In all, 39% of the caregivers had a high burden score, 46% perceived mild-to-moderate burden severity, and 15% perceived no to mild burden. Mild-to-moderate depressive symptoms were present in 23% and 16% had severe-to-extremely severe depressive symptoms. Mild-to-moderate anxiety symptoms were evident in 19% of caregivers and a further 19% had severe-to-extremely severe anxiety symptoms. Routine assessment of burden and psychiatric morbidity in the caregiver will help to reduce their burden and thus help them care for their children more appropriately and efficiently.

The Latina Caregiver Burden Scale: Assessing the Factor Structure for Rapid Clinical Assessment

ERIC Educational Resources Information Center

Land, Helen; Guada, Joseph

2011-01-01

The study of caregiver burden is important for those faced with chronic illnesses such as AIDS as caregivers are the first line of care provision, sustaining care recipients in the home. Because perception of burden may vary across caregiver cultural groups, accurate measurement of burden is crucial to offer culturally sensitive services for those…

Decreasing informal caregiver burden with social media.

PubMed

Watkins, Tammi

2014-05-01

In 2008, there were 44 million informal family caregivers and the number is expected to rise in the next decade. Hospice clinicians need to explore ways to decrease the burden of care for these informal caregivers. The use of electronic technology and social media may be a key component in improving support at end of life in the home setting.

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

ERIC Educational Resources Information Center

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.…

Neuropsychiatric Symptoms and Executive Functioning in Patients with Mild Cognitive Impairment: Relationship to Caregiver Burden

PubMed Central

Ryan, Kelly A.; Weldon, Anne; Persad, Carol; Heidebrink, Judith L.; Barbas, Nancy; Giordani, Bruno

2013-01-01

Background Caregivers of patients with mild cognitive impairment (MCI) need similar levels of support services as Alzheimer’s disease (AD) caregivers, but it is unclear if this translates to increased caregiver burden. Methods 135 participants and their caregivers (40 MCI, 55 AD and 40 normal controls, NC) completed questionnaires, and the patients were administered neuropsychological tests. Results The MCI caregivers reported significantly more overall caregiving burden than the NC, but less than the AD. They showed similar levels of emotional, physical and social burden as the AD caregivers. Among the MCI caregivers, the neuropsychiatric symptoms and executive functioning of the patients were related to a greater burden, and the caregivers with a greater burden reported lower life satisfaction and social support, and a greater need for support services. Conclusion These results indicate that MCI caregivers are at increased risk for caregiver stress, and they require enhanced assistance and/or education in caring for their loved ones. PMID:23128102

From burden to depressive symptoms: the case of Chinese-Canadian family caregivers for the elderly.

PubMed

Lai, Daniel W L

2009-01-01

This study aims to understand the effect of caregiving burden on depressive symptoms in Chinese-Canadian family caregivers, an area on which little research has been conducted. A random sample of 339 Chinese-Canadian caregivers for elderly family members completed a structured telephone survey. The results showed that depressive symptoms were predicted positively by caregiving burden, while caregiving burden was predicted negatively by financial adequacy and positively by the level of activities of daily living (ADL) and instrumental activities of daily living (IADL) caregiving assistance provided. Culturally appropriate strategies are needed to support Chinese family caregivers in order to properly manage caregiving responsibilities, financial needs, and psychological burden.

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

PubMed

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 < .05), an association that was stronger for blacks. Interestingly, despite significant levels of objective burden, there was an association between lower depressive symptoms in black care recipients when there was an 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.

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

PubMed

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.

Burden, perceived health status, and mood among caregivers of Parkinson's disease patients.

PubMed

Martinez-Martin, Pablo; Arroyo, Susana; Rojo-Abuin, Jose Manuel; Rodriguez-Blazquez, Carmen; Frades, Belen; de Pedro Cuesta, Jesus

2008-09-15

The objective of this study is to describe the characteristics of the caregivers of patients with Parkinson's disease (PD) and to analyze the association between these characteristics and caregiver burden, perceived health and mood status, and identify their predictors. A multicenter, nationwide, observational, cross-sectional study that included 289 patient-caregiver pairs was conducted. Caregiver self-assessments were the Hospital Anxiety and Depression Scale (HADS), EuroQol (EQ), and Zarit Caregiver Burden Inventory (ZCBI). Most caregivers in the study were women aged 60 years or thereabouts. Over two thirds were gainfully employed or housewives, 75% were patients' spouses, and the majority (96.5%) had been permanently taking care of the patient for 6 +/- 5.4 years. Less than 5% of patients were in the most advanced stages of disease, and direct costs were 6,350 euros per patient per year. Caregivers had more mood disorders and worse health-related quality of life (HRQol; EQ-Tariff) than did the general population. Caregiver HADS and EuroQol scores displayed a weak correlation (r(S) = 0.01-0.28) with patient-related variables (disease duration, HY, SCOPA-Motor, SCOPA-AUT, HADS, PPRS, and CISI-PD) whereas the ZCBI correlated moderately (r(S) = 0.27-0.47). Among caregivers, the EQ-Tariff was significantly lower and the HADS-Anxiety scores significantly higher for women. ZCBI and HADS-depression, though not EuroQol and HADS-anxiety, scores significantly increased with increasing PD severity levels. Caregivers' affective status proved the most important factor influencing their burden and perceived health, whereas patient-related variables influenced caregiver burden and mood but not health status. In PD, prevalence of affective disorders among patients' caregivers is high and influences both burden and HRQoL. (c) 2007 Movement Disorder Society.

Burden, interdependence, ethnicity, and mental health in caregivers of patients with schizophrenia.

PubMed

Suro, Giulia; Weisman de Mamani, Amy G

2013-06-01

Caring for a patient with schizophrenia often results in high levels of perceived burden and poorer overall mental health. Using a sample of 176 caregivers of patients with schizophrenia, the present study examined how two components of burden (objective and subjective) interacted with interdependence and ethnicity to influence relatives' overall mental health. In line with study hypotheses, and with the stress-appraisal-coping model developed by Lazurus and Folkman (1984), we found that subjective burden mediated the relationship between objective burden and mental health. In other words, subjective appraisals of caregiving appeared to partially underlie the association between the concrete costs of caregiving and psychological outcomes in schizophrenia caregivers. Also as hypothesized, we found that interdependence, or the perceived interconnectedness of individuals within a group, moderated the relationship between objective burden and subjective burden. In other words, when levels of interdependence were high, the objective components of burden appeared to have a weaker relationship with subjective burden. When interdependence was low, on the other hand, objective burden was more likely to be associated with subjective burden. This finding suggests that helping caregivers to value harmony and connection with others over individual self-interests may reduce the likelihood that objective stressors (which are often inevitable in schizophrenia) will result in subjective distress. On the basis of prior research, we also tested several hypotheses regarding the role of ethnicity and its association with burden, interdependence, and mental health. However, contrary to expectations, no ethnic patterns were observed. © FPI, Inc.

Predictors of caregiving burden: impact of subjective health, negative affect, and loneliness of octogenarians and centenarians.

PubMed

Lee, Kyuho; Martin, Peter; Poon, Leonard W

2017-11-01

This study aimed (1) to determine whether octogenarian and centenarian care recipients' self-report on physical, social, and emotional status are different from caregivers' reports, (2) to assess associations between octogenarian and centenarian care recipients' poor physical, social, and emotional status and caregiver burden, and (3) to determine which report, the care recipients' self-report or caregivers' report, about the participants' physical and emotional status predicted more accurately levels of caregiver burden. Self-ratings and caregiver informant ratings were obtained from 309 participants of the Georgia Centenarian Study. Care recipients' health, negative affect, and loneliness were reported by both the caregivers and care recipients for the analyses. Differences between care recipients' and caregivers' reports were assessed by t-test. Blockwise multiple regression analysis was computed to assess predictors of caregiver burden. Caregivers' reports on the three measures were significantly higher than self-reports. Caregivers' negative affect and loneliness, not physical health, reported by caregivers predicted higher caregiver burden. Care recipients' reports did not predict caregiver burden. Caregivers perceived care recipients' social and emotional status more negatively, and caregivers' negative perceptions on care recipients' well-being status were an important predictor of caregiver burden.

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

PubMed

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.

PubMed

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.

PubMed

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].

PubMed

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.

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

PubMed

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 < .01) and was negatively related to Zarit Caregiver Burden Interview total score (β = -.28, P < .01). Family 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.

Family Stigma and Caregiver Burden in Alzheimer's Disease

ERIC Educational Resources Information Center

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.

PubMed

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.

PubMed

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.

Burden and Depression in Caregivers of Blind Patients in New York State.

PubMed

Braich, Puneet S; Jackson, Matthew; Knohl, Stephen J; Bhoiwala, Devang; Gandham, Sai B; Almeida, David

2016-06-01

To describe the degree of burden of care and the proportion at risk of depression among individuals caring for legally blind patients. We performed a cross-sectional study of 486 individuals providing care to their family members who were legally blind. Best-corrected visual acuity of the better-seeing eye in patients determined group placement: Group 1, 20/200-10/200; group 2, 10/200 to light perception (LP); group 3, no light perception (NLP); group VF, visual field loss to <20 central degrees. Burden was evaluated using the Burden Index of Caregivers (BIC-11) and the prevalence at risk of depression was determined by the Center for Epidemiologic Studies Depression (CES-D) scale. Total mean BIC-11 scores ranged from 8.78 ± 4.82 (group 1) to 12.03 ± 5.22 (group 3; p = 0.04). Daily hours spent on close supervision, intensity of caregiving and presence of multiple chronic illnesses in caregivers were the significant covariates affecting BIC-11 scores (p < 0.05). The prevalence of caregivers at risk of depression increased with vision loss from 6.9% (group 1) to 17.9% (group 3; p < 0.05). Female caregivers had an odds ratio (OR) of 2.89 for depression (95% confidence interval, CI, 1.07-3.97; p = 0.04). Caregivers with ≥2 comorbidities had OR 4.24 (95% CI 2.41-6.11) for risk of depression (p < 0.01). Burden of care was highest among caregivers who provided greater hours of supervision. Patients with more limitations in their activities of daily living had caregivers who reported higher burden. Female caregivers and caregivers with multiple chronic illnesses were at higher risk of depression.

[Burden of caregiving and its repercussions on caregivers of end-of-life patients: a systematic review of the literature].

PubMed

Delalibera, Mayra; Presa, Joana; Barbosa, António; Leal, Isabel

2015-09-01

Caring for a family member with an advanced and/or terminal illness can be a great emotional, physical and financial burden that has an impact on the quality of life of the caregivers. The scope of this study was to conduct a systematic review of the literature on the burden of caregiving, related factors and the consequences for family caregivers of advanced stage cancer patients or patients in end-of-life or palliative care. A search for scientific papers published in the EBSCO, Web of Knowledge and BIREME databases was conducted since records on this topic began in the databases through March 2014. Of the 582 articles found, only 27 were selected. The majority of the articles found that family caregivers were overburdened. Some studies found that the care-giving burden was associated with characteristics of the patients and their illnesses while, in other studies, it was associated with poor health of the caregiver, greater psychopathological symptoms (anxiety, depression, emotional distress) and with the development of complications in the grieving process. However, hope, social support, the ability of the caregiver to attribute meaning to the experience of caring and feeling comfortable with the tasks of caring were associated with lower levels of burden.

Patients on the waiting list for liver transplantation: caregiver burden and stress.

PubMed

Miyazaki, Eliane Tiemi; Dos Santos, Randolfo; Miyazaki, M Cristina; Domingos, Neide M; Felicio, Hellen C; Rocha, Marcia F; Arroyo, Paulo C; Duca, William J; Silva, Renato F; Silva, Rita C M A

2010-10-01

Over the last few decades, informal caregivers of patients with chronic diseases have received more attention, and there is a growing volume of studies demonstrating high rates of burden, stress, and mental disorders in this group of individuals. The objective of this study was to evaluate the burden, stress, and psychosocial characteristics of informal caregivers of liver transplantation candidates. Participants were assessed by individual evaluations with the following instruments: a semistructured interview, the Caregiver Burden Scale, the Inventário de Sintomas de Stress para Adultos de Lipp, and the Beck Depression Inventory. The Mann-Whitney test was used for statistical analysis with a significance level of 0.05. The characteristics of the study group (n = 61) were similar to those of groups in other studies with respect to gender (82% were women), kinship (64% were spouses), and age (the mean age was 47.6 years). The main stressors identified by the participants were as follows: doubts about ways to react in a crisis or in emergency situations (42.6%), mood swings of the patient (29.5%), and care involving food and medications (27.9%). Approximately 25% of the caregivers reported that they felt unprepared to adequately perform their roles. Data analysis indicated a greater burden overall on caregivers when the patient's Model for End-Stage Liver Disease score was greater than or equal to 15 points (P = 0.041). Furthermore, caregivers of patients with alcoholic liver disease showed higher depression (P = 0.034) and overall burden scores (P = 0.031) versus caregivers of patients with liver disease due to other etiologies. In conclusion, the participants showed significantly high levels of burden, stress, and depression. Support measures and caregiver preparation should be implemented by health care providers. © 2010 AASLD.

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

PubMed

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.

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

PubMed

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

Quality of life and burden in caregivers of youth with obsessive-compulsive disorder presenting for intensive treatment

PubMed Central

Wu, Monica S.; Hamblin, Rebecca; Nadeau, Joshua; Simmons, Jessica; Smith, Ashley; Wilson, Meredith; Eken, Stephanie; Small, Brent; Phares, Vicky; Storch, Eric A.

2018-01-01

Background Pediatric obsessive-compulsive disorder (OCD) is associated with deleterious familial effects; caregivers are often enmeshed in the disorder and can experience considerable burden and decreased quality of life (QoL). Consequently, this study examined burden and QoL in caregivers of youth with OCD enrolled in an intensive outpatient or partial hospitalization program. Method The relationships between caregiver QoL and burden and the following variables were investigated: OCD symptom severity, functioning (youth functional impairment, general family functioning), family (family accommodation, parental relationship satisfaction, positive aspects of caregiving), and comorbid psychopathology (caregiver anxiety and depressive symptoms, youth internalizing and externalizing behaviors). Seventy-two child and caregiver dyads completed clinician- and self-rated questionnaires. Results Components of caregiver QoL correlated with caregiver-rated functional impairment, family accommodation, youth externalizing behaviors, and caregiver psychopathology. Aspects of caregiver burden correlated with child OCD symptom severity, functional impairment related to OCD, as well as caregiver and child comorbid psychopathology. Caregiver depressive symptoms predicted caregiver QoL, and caregiver depressive symptoms and child externalizing symptoms both predicted caregiver burden. Caregiver burden did not mediate the relationship between obsessive-compulsive symptom severity and caregiver QoL. Conclusion Ultimately, elucidating factors associated with increased caregiver burden and poorer QoL is pertinent for identifying at-risk families and developing targeted interventions. PMID:29031217

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

PubMed

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.

PubMed

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

Understanding Social Support Burden Among Family Caregivers

PubMed Central

Washington, Karla; Demiris, George; Parker Oliver, Debra; Shaunfield, Sara

2014-01-01

Despite the abundance of research on social support, both as a variable in larger studies and as a central focus of examination, there is little consensus about the relationship between social support and health outcomes. Current social support measures typically account only for frequency and size of network and a paucity of research exists that has explained social support burden, defined as the burden associated with accessing and receiving support from others. We analyzed audio-recorded discussions by hospice family caregivers about their caregiving problems and potential solutions to examine social relationships within networks and identify the processes that influence social support seeking and receiving. Using qualitative thematic analysis, we found that caregivers providing hospice care experience social support burden resulting from perceived relational barriers between friends and family, the inclination to remain in control, recognition of the loss of the patient as a source of social support and guidance in decision-making, family dynamics and decreased availability of emotional support. Social support researchers should consider how the quality of communication and relationships within social networks impacts the provision and subsequent outcomes of social support in varying contexts. Findings from this study suggest that hospice social support resources should be tailored to the caregiver’s support needs and include assessment on the type of support to be offered. PMID:24345081

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

PubMed

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 among Adults Caring for People Living with HIV/AIDS (PLWHA) in Southern India

PubMed Central

Chandran, Vishnu; Chowta, Nithyananda; Ramapuram, John; Bhaskaran, Unnikrishnan; Achappa, Basavaprabhu; Jose, Hyma

2016-01-01

Introduction In India, family caregivers provide bulk of care to People Living With HIV/AIDS (PLWHA). Caregiver burden refers to the physical, emotional and financial hardships associated with providing care to a diseased individual. Attending to the needs of PLWHA can place a significant burden on family members. This may adversely affect their Quality of Life (QOL). Aim The main aim of our study was to assess the caregiver burden and QOL among the family members of PLWHA in Southern India. We also determined the impact of caregiver burden on QOL. Materials and Methods This facility based cross-sectional study was carried out at Kasturba Medical College (KMC) Mangalore. The study was conducted over a period of 18 months starting from October 2013. A total of 360 caregivers participated in our study. The data were collected by face-to-face interview. Caregiver burden was assessed using the Zarit Burden scale & WHOQOL-BREF scale was used to assess the QOL of caregivers. The collected data was entered and analysed using SPSS version 11.5. A p-value of less than 0.05 was considered statistically significant. Results The mean age of caregivers was 36.09± 10.18 years. Most of the caregivers were females 279 (77.5%). Majority of caregivers 184 (51.1%) belonged to Middle/Lower Middle socioeconomic class (Kuppuswamy class III). Majority of PLWHA 155 (43.1%) had Stage 2 disease. Mean CD4 count of the patients was 405.2± 240 cells/μL. In our study 88(24.4%) caregivers had moderate to severe burden and 36(10%) had very severe burden. Physical domain of QOL showed maximum score of 60.28±13.08, while a minimum score of 51.88 ± 14.20 was seen in social domain. With increase in caregiver burden, the mean QOL scores decreased which was statistically significant. Conclusion Our study highlights the need to counsel the caregivers on how to deal with PLWHA in the family. Family care plays a major role in the general wellbeing of PLWHA. Majority of national HIV programmes all

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

PubMed

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

2016-12-07

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 spousal and adult-child caregivers of Dutch older adults, both cross-sectional and longitudinal (12-months follow-up). In 2010 and 2011 baseline and follow-up data was collected in a sample of informal caregivers and care recipients in the Northern provinces of the Netherlands. Subjective burden included 7 burden dimensions and a summary score for overall subjective burden, based on the Care-Related Quality of Life Instrument (CarerQoL-7D). Objective stressors were the time investment in caregiving (hours of household care, personal care, practical care) and the health situation of the care recipient, including multimorbidity, functional limitations (Katz Index of Independence Basic Activities of Daily Living (ADL) and Instrumental Activities of Daily Living (IADL), and cognitive functioning problems (EQ-5D + C). Correlates of subjective burden were evaluated with linear and logistic regression analyses. The sample consisted of 356 caregivers at baseline (43% spousal, 57% adult-child caregivers), and 158 caregivers at follow-up (45% spousal, 55% adult-child caregivers). At baseline and follow-up, spousal caregivers experienced a higher overall subjective burden, and reported more often mental health problems, physical health problems, and problems with combining daily activities, compared to adult-child caregivers. For spousal caregivers, a poorer health situation of the care recipient was associated with higher subjective burden, while adult-child caregivers reported higher levels of subjective burden when their time investment in caregiving was high. Subjective burden at follow-up was mainly explained by baseline subjective burden. These results indicate that for effective

Burden and associated pathologies in family caregivers of Alzheimer’s disease patients in Spain

PubMed Central

Cotelo, Natalia Vérez; Rodríguez, N. Floro Andrés; PÉREZ, José A. Fornos; Iglesias, J. Carlos Andrés; Lago, Marcos Ríos

2014-01-01

Objectives: To evaluate the profile of family caregivers of Alzheimer’s disease patients, identify any signs of psychopathology, quantify the level of perceived burden on the caregiver, and determine the caregiver’s relationship with their pharmacist. Methods: A cross-sectional study was conducted at a community pharmacy in Pontevedra, Spain. Demographic variables were collected, and the following questionnaires were administered: the Beck Depression Inventory-II, STAI-Anxiety Questionnaire, Zarit Burden Scale, family APGAR scale, and the Duke-UNC questionnaire. Results: The typical caregiver profile consists of a 55-year old first degree relative (mostly daughters) with a primary education who belongs to a functional or mildly dysfunctional family. Nearly one quarter (24%) of caregivers had a high perception of burden, with anxiety in 20% of caregivers and symptoms of depression in 20%. Family caregivers usually went to the same pharmacy as the patients (96%), were treated with psychotropic drugs (68%), and interacted with the pharmacist (92%). Conclusion: This study confirmed that psychological distress and burden is present among family caregivers. Care for caregivers should be integrated into patient care as part of a national plan, including grants and subsidies, which will result in better care of Alzheimer’s patients. Pharmacists are the most accessible health care professionals and can provide information about Alzheimer’s disease management to caregivers to ease the burden of care. PMID:26131040

An evaluation of psychometric properties of caregiver burden outcome measures used in caregivers of children with cerebral palsy: a systematic review protocol.

PubMed

Dambi, Jermaine M; Jelsma, Jennifer; Mlambo, Tecla; Chiwaridzo, Matthew; Dangarembizi-Munambah, Nyaradzai; Corten, Lieselotte

2016-03-09

Cerebral palsy (CP) is the most common, life-long paediatric disability. Taking care of a child with CP often results in caregiver burden/strain in the long run. As caregivers play an essential role in the rehabilitation of these children, it is therefore important to routinely screen for health outcomes in informal caregivers. Consequently, a plethora of caregiver burden outcome measures have been developed; however, there is a dearth of evidence of the most psychometrically sound tools. Therefore, the broad objective of this systematic review is to evaluate the psychometrical properties and clinical utility of tools used to measure caregiver burden in caregivers of children with CP. This is a systematic review for the evaluation of the psychometric properties of caregiver burden outcome tools. Two independent and blinded reviewers will search articles on PubMed, Scopus, Web of Science, CINAHL, PsychINFO and Africa-Wide Google Scholar. Information will be analysed using predefined criteria. Thereafter, three independent reviewers will then screen the retrieved articles. The methodological quality of studies on the development and validation of the identified tools will be evaluated using the four point COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. Finally, the psychometric properties of the tools which were developed and validated from methodological sound studies will then be analysed using predefined criteria. The proposed systematic review will give an extensive review of the psychometrical properties of tools used to measure caregiver burden in caregivers of children with CP. We hope to identify tools that can be used to accurately screen for caregiver burden both in clinical setting and for research purposes. PROSPERO CRD42015028026.

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

PubMed Central

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

Influence of family dynamics on burden among family caregivers in aging Japan

PubMed Central

Kusaba, Tesshu; Sato, Kotaro; Fukuma, Shingo; Yamada, Yukari; Matsui, Yoshinori; Matsuda, Satoshi; Ando, Takashi; Sakushima, Ken; Fukuhara, Shunichi

2016-01-01

Background. Long-term care for the elderly is largely shouldered by their family, representing a serious burden in a hyper-aging society. However, although family dynamics are known to play an important role in such care, the influence of caring for the elderly on burden among caregiving family members is poorly understood. Objective. To examine the influence of family dynamics on burden experienced by family caregivers. Methods. We conducted a cross-sectional study at six primary care clinics, involving 199 caregivers of adult care receivers who need long-term care. Participants were divided into three groups based on tertile of Index of Family Dynamics for Long-term Care (IF-Long score), where higher scores imply poorer relationships between care receivers and caregiving family: best, <2; intermediate, 2 to <5; worst, ≥5. The mean differences in burden index of caregivers (BIC-11) between the three groups were estimated by linear regression model with adjustment for care receiver’s activity of daily living and cognitive function. Results. Mean age of caregivers was 63.2 years (with 40.7% aged ≥ 65 years). BIC-11 scores were higher in the worst IF-Long group (adjusted mean difference: 4.4, 95% confidence interval: 1.2 to 7.5) than in the best IF-Long group. We also detected a positive trend between IF-Long score and BIC-11 score (P-value for trend <0.01). Conclusion. Our findings indicate that family dynamics strongly influences burden experienced by caregiving family members, regardless of the care receiver’s degree of cognitive impairment. These results underscore the importance of evaluating relationships between care receivers and their caregivers when discussing a care regimen for care receivers. PMID:27450988

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.

PubMed

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 < 0.01). However, post 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

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

PubMed

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.

Predictors of burden among lower socioeconomic status caregivers of persons with chronic mental illness.

PubMed

Biegel, D E; Milligan, S E; Putnam, P L; Song, L Y

1994-10-01

This study uses a stress-coping-support framework to examine the predictors of caregiver burden with a sample of 103 lower social class family caregivers of persons with chronic mental illness. Results of multiple regression analyses show that the greater the frequency of client behavioral symptoms and the lower the amount of perceived support from family members, the higher the level of overall caregiver burden. Examination of the predictors of specific types of burden-family disruption, stigma, strain, and dependency-reveal that different constellations of variables predict different types of burden. The need for mental health agencies to address caregiver and client concerns is addressed. Implications are presented for practice and future research.

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

PubMed

Fridman, Moshe; Banaschewski, Tobias; Sikirica, Vanja; Quintero, Javier; Erder, M Haim; Chen, Kristina S

2017-01-01

Burden on caregivers of children/adolescents with attention-deficit/hyperactivity disorder (ADHD) is multidimensional, but incompletely understood. To analyze caregiver burden across the concepts of work, social/family life, and parental worry/stress, in relation to selected contributing factors. 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). 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 work (odds ratios [ORs] =1.68 [95% confidence interval {CI} 1.33, 2.12], 1.87 [1.37, 2.54], 3.47 [2.51, 4.78] for 1, 2, 3+ comorbidities, respectively) and planning the day around the child/adolescent (OR =1.42 [95% CI 1.17, 1.72], 1.73 [1.33, 2.15], 2.65 [1.99, 3.53]); the strongest severity associations were: quitting a job (OR =1.41 [95% CI 1.26, 1.59]) and planning a day around the child/adolescent (OR =1.26 [95% CI 1.20, 1.32]). Increased medication adherence was most associated with reducing the caregiver burden for altered work (OR =0.57 [95% CI 0.45, 0.72]), worrying about how they are being perceived as a parent (OR =0.68 [0.56, 0.83]), and avoiding social

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

PubMed Central

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

Primary caregivers of schizophrenia outpatients: burden and predictor variables.

PubMed

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

PubMed

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 < 0.001) and depression (P = 0.001) on caregiver burden. Positive aspects of caregiving completely 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.

Caregiver Burden Varies by Sensory Subtypes and Sensory Dimension Scores of Children with Autism

ERIC Educational Resources Information Center

Hand, Brittany N.; Lane, Alison E.; De Boeck, Paul; Basso, D. Michele; Nichols-Larsen, Deborah S.; Darragh, Amy R.

2018-01-01

Understanding characteristics associated with burden in caregivers of children with autism spectrum disorder (ASD) is critical due to negative health consequences. We explored the association between child sensory subtype, sensory dimension scores, and caregiver burden. A national survey of caregivers of children with ASD aged 5-13 years was…

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

PubMed

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.

Cancer Caregiver: Perceived Benefits of Technology.

PubMed

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.

Determination of Care Burden of Caregivers of Patients with Multiple Sclerosis in Turkey.

PubMed

Özmen, Serpil; Yurttaş, Afife

2018-01-01

The aim of this study was to determine the care burden of caregivers of patients with multiple sclerosis in Turkey. This descriptive study was conducted with 92 caregivers. To collect data, information form and Zarit Caregiver Burden Interview (ZCBI) were used. Most of the caregivers (65.2%) were females and 71.7% of them were married. The average age of caregivers was 38 and above. The mean ZCBI score of caregivers was 25.44 ± 9.50. The ZCBI score was significantly higher in caregivers providing care for more than six years (28.09 ± 10.16). Additionally, the ZCBI score was significantly higher in caregivers providing care 3-4 hours per day (32.23 ± 8.37) and providing physical care (29.28 ± 5.18).

Association between family satisfaction and caregiver burden in cancer patients receiving outreach palliative care at home.

PubMed

Naoki, Yoko; Matsuda, Yoshinobu; Maeda, Isseki; Kamino, Hideka; Kozaki, Yoko; Tokoro, Akihiro; Maki, Norimasa; Takada, Minoru

2018-06-01

ABSTRACTObjective:Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction. Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively. Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = -0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = -0.563, p = 0.01). Several burden items-including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else-were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions. Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.

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

PubMed

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 < .001). Additionally, there was a negative correlation within the three subscales of the Modified Montgomery-Borgatta Caregiver Burden Scale: objective burden (r = -.65, p = < .001), stress burden (r = -.41, p = .001), and relationship burden (r = -.29, p = .021, p = .001). Based on the findings of an association between increased caregiver burden and the perception of decreased health 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.

Determination of Care Burden of Caregivers of Patients with Multiple Sclerosis in Turkey

PubMed Central

Özmen, Serpil

2018-01-01

The aim of this study was to determine the care burden of caregivers of patients with multiple sclerosis in Turkey. This descriptive study was conducted with 92 caregivers. To collect data, information form and Zarit Caregiver Burden Interview (ZCBI) were used. Most of the caregivers (65.2%) were females and 71.7% of them were married. The average age of caregivers was 38 and above. The mean ZCBI score of caregivers was 25.44 ± 9.50. The ZCBI score was significantly higher in caregivers providing care for more than six years (28.09 ± 10.16). Additionally, the ZCBI score was significantly higher in caregivers providing care 3-4 hours per day (32.23 ± 8.37) and providing physical care (29.28 ± 5.18). PMID:29755612

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

PubMed

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.

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

PubMed

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 < 0.05), it did not show a significant moderating effect. Perceived 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.

Employment status, social function decline and caregiver burden among stroke survivors. A South Indian study.

PubMed

Sreedharan, Sapna Erat; Unnikrishnan, J P; Amal, M G; Shibi, B S; Sarma, Sankara; Sylaja, P N

2013-09-15

Stroke leaves at least 60% of the survivors with moderate to severe disability limiting their employment status and social functioning leading to high levels of caregiver burden. We sought to study the employment status and level of change of social functioning of stroke survivors and their principal caregiver and correlate it with severity of stroke, functional disability, and anxiety and depression scores. One hundred and fifty stroke survivors and principal caregivers (3 months-2 years post-stroke) were recruited for the study. The employment status pre- and post-stroke was assessed. The social function of the patient and caregiver was analyzed using a 6 item social function scale developed for the study, encompassing culturally relevant questions. A 20 point scale adapted from Burden assessment schedule was used to assess the caregiver burden. Mean age of the study group was 54.37±12.072 (range 22-75 years), with 116 males and 34 females. Spouse was the principal caregiver for 142/150 patients (94.6%). In the stroke survivors, compared to the pre-stroke employment status of 62.7%, only 20.7% were employed post-stroke with half having change of job. But the employment status of caregiver was not reduced post-stroke (34.7% vs 33.3%). Employment loss in stroke survivors had a statistically significant association with severity of functional disability, male gender and presence of limb weakness (p values 0.037, 0.0001 and 0.043 respectively). There was an overall decline in social functions among the 6 parameters assessed in both the stroke survivors and caregivers. Of the caregiver burden, financial burden was more among female and older caregivers. The functional status and motor weakness of the stroke survivors did not tend to worsen the overall caregiver burden. Loss of occupation among stroke survivors is high. The decline in social function among stroke survivors and caregivers was significant. Even though functional disability contributed to employment loss

Gender differences in caregiver burden and its determinants in family members of terminally ill cancer patients.

PubMed

Schrank, Beate; Ebert-Vogel, Alexandra; Amering, Michaela; Masel, Eva K; Neubauer, Marie; Watzke, Herbert; Zehetmayer, Sonja; Schur, Sophie

2016-07-01

Female family caregivers consistently report higher levels of stress and burden compared to male caregivers. Explanations for the apparently higher psychological vulnerability of female caregivers are largely missing to date. This study assesses the correlates and determinants of caregiver burden in family caregivers of advanced cancer patients with a specific focus on gender differences. Three hundred and eight self-identified main informal caregivers of advanced cancer patients were cross-sectionally assessed using structured questionnaires for caregiver burden and hypothesised determinants of burden, including sociodemographic characteristics, caring arrangements, support needs, hope and coping style. Gender differences and predictors of burden were assessed using t-tests, chi-squared tests and univariate linear regression. Significant univariate predictors were entered in an analysis of covariance separately for men and women. Burden was significantly higher in women. Hope was the most significant protective factor against burden in both genders, together with perceived fulfilment of support needs. Only in women emotion-oriented coping and being in employment while caring were significantly predictive of higher burden in the multivariate analysis. The model explained 36% of the variance in burden in men and 29% in women. Psychological support interventions for family caregivers should take gender-specific risk factors into account. Interventions focusing on keeping up hope while caring for a terminally ill family member may be a valuable addition to palliative services to improve support for family carers. Women may benefit from interventions that address adaptive coping and strategies to deal with the dual demands of employment and caring. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd. Copyright © 2015 John Wiley & Sons, Ltd.

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

PubMed

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.

Family Caregiver Role and Burden Related to Gender and Family Relationships

PubMed Central

Friedemann, Marie-Luise; Buckwalter, Kathleen C.

2015-01-01

This study described and contrasted family caregivers and explored the effect of gender and family relationship on the caregiver’s role perception, workload, burden, and family help. Home care agencies and community organizations assisted with the recruitment of 533 multicultural, predominantly Latino caregivers who were interviewed at home. The Caregiver Identity Theory guided the study. Survey instruments were standardized tools or were constructed and pretested for this study. Descriptive statistics and t-test analyses assisted in describing the sample and multivariate analyses were used to contrast the caregiver groups. Findings suggested a gendered approach to self-appraisal and coping. Men in this predominantly Latino and Caribbean sample felt less burden and depression than women who believed caregiving is a female duty. Family nurses should pay attention to the most vulnerable groups: older spouses resistant to using family and community resources and hard-working female adult children, and assess each family situation individually. PMID:24777069

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

PubMed

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.

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

PubMed

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.

Feeling of burden, psychological distress, and anxiety among primary caregivers of children with home enteral nutrition.

PubMed

Calderón, Caterina; Gómez-López, Lilianne; Martínez-Costa, Cecilia; Borraz, Soraya; Moreno-Villares, José Manuel; Pedrón-Giner, Consuelo

2011-03-01

To examine the relationship between several psychological factors and the feeling of burden experienced by caregivers of children with home enteral nutrition. Fifty-six mothers of pediatric patients with chronic diseases requiring long-term home enteral nutrition were recruited. They were asked to respond to specific questionnaires about their anxiety symptoms (State-Trait Anxiety Inventory), psychological distress (SCL-90-R) and feeling of burden (Zarit-scale). Caregivers' feeling of burden was found to be statistically associated to psychological distress (r = .516, p < .001) and trait anxiety (r = .376, p = .005). No significant differences were found between the type of diagnosis and caregiver burden. Regression analysis indicated psychological distress has a partial mediational effect in the relationship between trait anxiety and caregivers' burden. Psychological distress and anxiety show a positive correlation with caregivers' feeling of burden, and may disrupt family well-being. Early identification of high-risk situations is essential in order to plan specific psychosocial aid efficiently.

The Caregiver Burden Questionnaire for Heart Failure (CBQ-HF): face and content validity

PubMed Central

2013-01-01

Background A new caregiver burden questionnaire for heart failure (CBQ-HF v1.0) was developed based on previously conducted qualitative interviews with HF caregivers and with input from HF clinical experts. Version 1.0 of the CBQ-HF included 41 items measuring the burden associated with caregiving in the following domains: physical, emotional/psychological, social, and impact on caregiver’s life. Following initial development, the next stage was to evaluate caregivers’ understanding of the questionnaire items and their conceptual relevance. Methods To evaluate the face and content validity of the new questionnaire, cognitive interviews were conducted with caregivers of heart failure patients. The cognitive interviews included a “think aloud” exercise as the patient completed the CBQ-HF, followed by more specific probing questions to better understand caregivers’ understanding, interpretation and the relevance of the instructions, items, response scales and recall period. Results Eighteen caregivers of heart failure patients were recruited. The mean age of the caregivers was 50 years (SD = 10.2). Eighty-three percent of caregivers were female and most commonly the patient was either a spouse (44%) or a parent (28%). Among the patients 55% were NYHA Class 2 and 45% were NYHA Class 3 or 4. The caregiver cognitive interviews demonstrated that the CBQ-HF was well understood, relevant and consistently interpreted. From the initial 41 item questionnaire, fifteen items were deleted due to conceptual overlap and/or item redundancy. The final 26-item CBQ-HF (v3.0) uses a 5-point Likert severity scale, assessing 4 domains of physical, emotional/psychological, social and lifestyle burdens using a 4-week recall period. Conclusions The CBQ-HF (v3.0) is a comprehensive and relevant measure of subjective caregiver burden with strong content validity. This study has established that the CBQ-HF (v3.0) has strong face and content validity and should be valuable as an

Effects of the TCARE® intervention on caregiver burden and depressive symptoms: preliminary findings from a randomized controlled study.

PubMed

Montgomery, Rhonda J V; Kwak, Jung; Kosloski, Karl; O'Connell Valuch, Katharine

2011-09-01

We examined the effects of a manualized care management protocol specifically designed for care managers working with caregivers, the Tailored Caregiver Assessment and Referral® (TCARE®) protocol, on caregiver identity discrepancy, burden, and depressive symptoms. Preliminary data from a longitudinal, randomized, controlled intervention study with 266 family caregivers served by 52 care managers in 4 states were analyzed using repeated measures random effects regression procedures. Caregivers in the intervention and control groups were repeatedly assessed for up to 9 months on caregiver identity discrepancy, 3 areas of caregiving burden-objective, relationship, and stress burdens; depression; and intention for nursing home placement. We found significant group by time interaction effects for caregiver identity discrepancy, relationship burden, stress burden, depression, and intention for nursing home placement. Caregivers in the intervention group experienced significant improvement on these measures, whereas caregivers in the control group worsened on these measures over time. The preliminary findings provide strong support for effectiveness of the TCARE® protocol on improving caregiver well-being and mental health outcomes.

Burden and Distress in Caregivers of Patients With Panic Disorder and Agoraphobia.

PubMed

Borgo, Evandro Luis Pampani; Ramos-Cerqueira, Ana Teresa de Abreu; Torres, Albina Rodrigues

2017-01-01

We estimated the prevalence, severity, and correlates of burden and distress in caregivers of patients with panic disorder and agoraphobia. The instruments used in this cross-sectional study with 40 caregivers and 40 outpatients were Carer Burden Interview (CBI), Family Burden Interview Schedule (FBIS-BR), Self-Reporting Questionnaire (SRQ), Panic and Agoraphobia Scale (PAS), and Mini-international Neuropsychiatric Interview. Bivariate analyses were followed by regression analyses. The patients' mean PAS score was 29.6, and the mean scores in the caregivers' burden scales were 27 (CBI) and 1.64 (FBIS-BR). Distress (or common mental disorder [CMD]) occurred in 37.5% and was associated with higher burden. In the multivariate analysis, the SRQ score was predicted by female sex and worse self-evaluation of health, the CBI score by CMD and public service, the FBIS-BR score by CMD and not living with the patient, the FBIS-objective score by CMD and being employed, the FBIS-subjective score by CMD, and the level of worry by the severity of patients' avoidance and panic attacks.

Neuropsychiatric Symptoms in Patients With Alzheimer's Disease: The Role of Caregiver Burden and Coping Strategies.

PubMed

García-Alberca, José María; Lara, José Pablo; Garrido, Victoria; Gris, Esther; González-Herero, Vanessa; Lara, Almudena

2014-06-01

This study was conducted to obtain data regarding the association of caregiver burden (CB) and neuropsychiatric symptoms (NPSs) in patients with Alzheimer's disease. We conducted a series of multiple linear regressions to determine the relationship between CB and NPSs and whether the caregiver coping strategies mediated this relationship. The NPSs were assessed using the Neuropsychiatric Inventory, and caregivers were evaluated with the Caregiver Burden Interview and the Inventory and the Coping Strategies Inventory. Results show that patients with more frequent and severe NPS were more likely to be cared for by more burdened caregivers, and this was partially mediated by caregiver coping strategies. More disengagement (β = .330,P< .001) and less engagement coping (β = -.347,P< .001) were predictors for NPS after adjusting for patient and caregiver characteristics. These results may be useful with a view to designing treatment interventions that aim to modify the use of caregiver coping strategies and to reduce NPSs. © The Author(s) 2014.

The UP-TECH project, an intervention to support caregivers of Alzheimer's disease patients in Italy: preliminary findings on recruitment and caregiving burden in the baseline population.

PubMed

Chiatti, Carlos; Rimland, Joseph M; Bonfranceschi, Franco; Masera, Filippo; Bustacchini, Silvia; Cassetta, Laura

2015-01-01

The paper describes recruitment results and characteristics of the UP-TECH clinical trial sample, including level of care services use, informal caregiver burden and its determinants. UP-TECH is designed to test innovative care solutions for community-dwelling patients with moderate stage Alzheimer's disease and their caregivers in Italy. Four hundred and fifty patient-caregiver dyads were randomized into three arms receiving different combinations of services, composed of case management interventions, nurse visits, assistive technology and educational brochures. The research nurses administered a questionnaire comprising an in-depth socio-demographic assessment and several clinical scales, such as Novak's Caregiver Burden Inventory. Analyses of baseline data were conducted using uni- and bi-variate statistics. Linear regressions were computed to identify de-confounded correlates of caregiver burden. Four hundred and thirty-eight patient-caregiver dyads were recruited and randomized. In our sample, patients are predominantly women (71.5%), with an average age of 81.5 years and a mean Mini-Mental State Examination score of 16.2. Caregivers are mostly women (66.2%) and offspring (55.7%), with a mean caregiver burden score of 27.6. They provide more than 50 hours of care per week, while receiving an almost negligible support from public services. Factors associated with caregiver burden are female gender, kinship and the patient's behavioral disturbances. The most important factor associated with lower burden is the employment of a live-in care worker. The paper provides a comprehensive description of moderate stage Alzheimer's disease patients and their caregivers, suggesting useful markers of caregiver burden. The well-balanced randomization assures the reliability of the study data-set for prospective evaluation of care strategies.

Quality of life of caregivers with relatives suffering from mental illness in Hong Kong: roles of caregiver characteristics, caregiving burdens, and satisfaction with psychiatric services

PubMed Central

2012-01-01

Background The study attempted to explore the quality of life (QoL) of Chinese caregivers with mentally ill relatives. It also aimed to examine the differential roles of caregiving burdens, caregiver characteristics, and satisfaction with psychiatric services in caregivers' QoL. Methods 276 caregivers with relatives attending community psychiatric facilities in Hong Kong were invited to fill out a questionnaire. One sample t-tests were conducted to compare the results of this study with that of other Chinese populations in Hong Kong, Taiwan, and mainland China. A hierarchical regression analysis was performed to examine the relative influence of different factors on caregivers' QoL. Results Our sample of caregivers had significantly lower QoL scores than other Chinese populations. Results also suggest that Chinese caregivers who had chronic illness, younger in age, a lower education level, experienced more difficulties in handling negative symptoms, and were more dissatisfied with mental health services had poorer quality of life. Indeed, caregiver characteristics displayed a much stronger association with caregivers' QoL than did caregiving burdens and satisfaction with psychiatric services. Conclusions This study supports the strong association of caregiver characteristics and the QoL of caregivers and establishes the nature of the relationship between satisfaction with mental health services and caregiver QoL. Implications for future research and practice are discussed. PMID:22289443

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

PubMed

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.

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

PubMed

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

ERIC Educational Resources Information Center

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…

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

PubMed

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

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). 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. 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). 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.

Caregiver burden and fatigue in caregivers of people with dementia: Measuring human herpesvirus (HHV)-6 and -7 DNA levels in saliva.

PubMed

Osaki, Tohmi; Morikawa, Takako; Kajita, Hiroyuki; Kobayashi, Nobuyuki; Kondo, Kazuhiro; Maeda, Kiyoshi

2016-01-01

We examined chronic fatigue, which has not been investigated in detail, in family caregivers for people with dementia. Forty-four community-dwelling family caregivers (the caregiver group: CG) and 50 elderly control participants (the non-caregiver group: NCG) participated in this study. We measured salivary human herpesvirus (HHV)-6 and -7 DNA levels and the Chalder fatigue scale (CFS) to assess levels of fatigue; we also measured the Center for Epidemiologic Studies-Depression Scale, Physical Activity Scale for the Elderly, Zarit Caregiver Burden Interview, Mini-Mental State Examination, Assessment of Motor and Process Skills, and Dementia Behavior Disturbance Scale. For CG, the salivary HHV-6 DNA levels and CFS scores were significantly higher than those in NCG. The salivary HHV-6 DNA levels in CG were significantly correlated with depressive symptoms, the cognitive function of the patients, and the activities of daily living/instrumental activities of daily living (ADL/IADL) abilities of the patients. The CFS scores in CG significantly correlated with caregiver burden, depression symptoms, leisure physical activity, the number of other family caregivers, and the hours spent for caregiving per week, as well as with behavior disturbances and ADL/IADL abilities. The salivary HHV-6 DNA levels may be added as a new biomarker for caregiver exhaustion. We concluded that fatigue assessments should be performed by not only a questionnaire, such as the CFS, but also by a biomarker search, such as HHV-6, when estimating the caregiver burden for family caregivers of people with dementia. Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.

Sociodemographic profile and level of burden of dementia patients’ caregivers who participate in a support group

PubMed Central

Diel, Lusiêni; Forster, Letícia M.K.; Kochhann, Renata; Chaves, Márcia Lorena Fagundes

2010-01-01

The Brazilian Alzheimer’s Association recommend the dementia patient’s caregiver to attend group meetings which aim to give information and enable them to express and share feelings with individuals who are facing similar difficulties. Objectives To identify the sociodemographic profile of the individuals who attend the Support Group for Family Members of Individuals with Alzheimer’s disease at Hospital de Clínicas de Porto Alegre, and to verify the degree of burden associated to the care given to this kind of patient. Methods Forty-eight participants were sub-divided into two groups: 23 non-caregivers and 25 caregivers. All participants answered a sociodemographic questionnaire, and the caregivers also answered the Zarit Burden Interview (ZBI). Student’s t test was used for comparison of parametric data, and Chi-square test for categorical data between caregivers and non-caregivers. Spearman’s rho correlation analysis was performed for the ZBI and the studied variables. Results Participants were predominantly women. Only age differentiated one subgroup from the other. The mean score on the ZBI was 35.1 (14.7), and most of the caregivers presented up to moderate burden. Conclusions Women attended the Support Group either as caregiver or non-caregiver. The level of burden among caregivers of high educational attainment was relatively high besides the short time as caregiver (up to a year). PMID:29213691

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

PubMed

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.

Determinants of Informal Care, Burden, and Risk of Burnout in Caregivers of Stroke Survivors: The CONOCES Study.

PubMed

Oliva-Moreno, Juan; Peña-Longobardo, Luz María; Mar, Javier; Masjuan, Jaime; Soulard, Stéphane; Gonzalez-Rojas, Nuria; Becerra, Virginia; Casado, Miguel Ángel; Torres, Covadonga; Yebenes, María; Quintana, Manuel; Alvarez-Sabín, Jose

2018-01-01

The aim of this article was to analyze the likelihood of receiving informal care after a stroke and to study the burden and risk of burnout of primary caregivers in Spain. The CONOCES study is an epidemiological, observational, prospective, multicenter study of patients diagnosed with stroke and admitted to a Stroke Unit in the Spanish healthcare system. At 3 and 12 months post-event, we estimated the time spent caring for the patient and the burden borne by primary caregivers. Several multivariate models were applied to estimate the likelihood of receiving informal caregiving, the burden, and the likelihood of caregivers being at a high risk of burnout. Eighty percent of those still alive at 3 and 12 months poststroke were receiving informal care. More than 40% of those receiving care needed a secondary caregiver at 3 months poststroke. The likelihood of receiving informal care was associated with stroke severity and the individual's health-related quality of life. When informal care was provided, both the burden borne by caregivers and the likelihood of caregivers being at a high risk of burnout was associated with (1) caregiving hours; (2) the patient's health-related quality of life; (3) the severity of the stroke measured at discharge; (4) the patient having atrial fibrillation; and (5) the degree of dependence. This study reveals the heavy burden borne by the caregivers of stroke survivors. Our analysis also identifies explanatory and predictive variables for the likelihood of receiving informal care, caregiver burden, and high risk of burnout. © 2017 American Heart Association, Inc.

Effects of the TCARE® Intervention on Caregiver Burden and Depressive Symptoms: Preliminary Findings From a Randomized Controlled Study

PubMed Central

Kwak, Jung; Kosloski, Karl; O’Connell Valuch, Katharine

2011-01-01

Objectives. We examined the effects of a manualized care management protocol specifically designed for care managers working with caregivers, the Tailored Caregiver Assessment and Referral® (TCARE®) protocol, on caregiver identity discrepancy, burden, and depressive symptoms. Methods. Preliminary data from a longitudinal, randomized, controlled intervention study with 266 family caregivers served by 52 care managers in 4 states were analyzed using repeated measures random effects regression procedures. Caregivers in the intervention and control groups were repeatedly assessed for up to 9 months on caregiver identity discrepancy, 3 areas of caregiving burden—objective, relationship, and stress burdens; depression; and intention for nursing home placement. Results. We found significant group by time interaction effects for caregiver identity discrepancy, relationship burden, stress burden, depression, and intention for nursing home placement. Caregivers in the intervention group experienced significant improvement on these measures, whereas caregivers in the control group worsened on these measures over time. Discussion. The preliminary findings provide strong support for effectiveness of the TCARE® protocol on improving caregiver well-being and mental health outcomes. PMID:21840840

[Productive social activities in mothers of intellectually disabled children moderate the relationship between caregiver burden and self-rated health].

PubMed

Yatsugi, Sawa; Suzukamo, Yoshimi; Izumi, Sinichi

2013-07-01

Recently, the length of time for which intellectually disabled children receive homecare has increased; hence, the mothers caring for these intellectually disabled children at home are being exposed to increasingly heavy caregiver burden. Previous studies have reported that negative psychological states, including caregiver burden, influence self-rated health status; however, when elderly people engaged in productive social activities, they experienced heightened positive psychological states. Therefore, the objective of this study was to investigate whether mothers' participation in productive social activities influenced the relationship between caregiver burden and self-rated health status. We performed a cross-sectional study using a questionnaire that included items on self-rated health, the modified Japanese version of the Zarit Caregiver Burden Interview, productive social activities, and various confounding variables. We sent the questionnaires to 270 mothers belonging to patient and family advocacy groups. We then compared the self-rated health and caregiver burden between a group of mothers involved in productive social activities and a group not involved in such activities. The relationships between self-rated health, caregiver burden, and productive social activities were analyzed using analysis of variance (ANOVA) and post-hoc testing. We obtained 120 valid responses. Mothers with greater burden had worse self-rated health than the other group (r=-0.305). According to the ANOVA results, the self-rated health of mothers involved in productive social activities did not significantly differ between caregiver burden groups (mild burden group: 3.4 vs. severe burden group: 3.12; F=1.3, P=.253), whereas the self-rated health of mothers without productive social activities showed a significant difference between caregiver burden groups (mild burden group: 3.4 vs. severe burden group: 2.7; F=5.6, P=.017). Mothers with greater burden had worse self-rated health

The reliability, validity and feasibility of tools used to screen for caregiver burden: a systematic review.

PubMed

Whalen, Kimberly J; Buchholz, Susan W

The overall objective of this review is to quantitatively measure the psychometric properties and the feasibility of caregiver burden screening tools. The more specific objectives were to determine the reliability, validity as well as feasibility of tools that are used to screen for caregiver burden and strain. This review considered international quantitative research papers that addressed the psychometric properties and feasibility of caregiver burden screening tools. The search strategy aimed to find both published and unpublished studies from 1980-2007 published only in the English language. An initial limited search of MEDLINE and CINAHL was undertaken followed by analysis of the text words contained in the title and abstract and the index terms used to describe the article. A second search identified keywords and index terms across major databases. Third, the reference list of identified reports and articles was searched for additional studies. Each paper was assessed by two independent reviewers for methodological quality prior to inclusion in the review using an appropriate critical appraisal instrument from the Joanna Briggs Institutes' System for the Unified Management, Assessment and Review (SUMARI) package. Because burden is a multidimensional construct defined internationally with a multitude of other terms, only those studies whose title, abstract or keywords contained the search terminology developed for this review were identified for retrieval. The construct of caregiver burden is not standardized, and many terms are used to describe burden. A caregiver is also identified as a carer. Instruments exist in multiple languages and have been tested in multiple populations. A total of 112 papers, experimental and non-experimental in nature, were included in the review. The majority of papers were non-experimental studies that tested or used a caregiver burden screening tool. Because of the nature of these papers, a meta-analysis of the results was not

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

PubMed

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.

Relationships among Symptom Management Burden, Coping Responses, and Caregiver Psychological Distress at End of Life.

PubMed

Washington, Karla T; Wilkes, Chelsey M; Rakes, Christopher R; Otten, Sheila J; Parker Oliver, Debra; Demiris, George

2018-05-04

Family caregivers (FCGs) face numerous stressors and are at heightened risk of psychological distress. While theoretical explanations exist linking caregiving stressors with outcomes such as anxiety and depression, limited testing of these theories has occurred among FCGs of patients nearing the end of life. Researchers sought to evaluate mediational relationships among burden experienced by hospice FCGs because of symptom management demands, caregivers' coping responses, and caregivers' psychological distress. Quantitative data for this descriptive exploratory study were collected through survey. Hypothesized relationships among caregiver variables were examined with structural equation modeling. Respondents were FCGs (N = 228) of hospice patients receiving services from a large, non-profit community hospice in the Mid-Southern United States. Burden associated with managing hospice patients' psychological symptoms was shown to predict psychological distress for FCGs. Caregivers' use of escape-avoidance coping responses mediated this relationship. Results suggest that FCGs would benefit from additional tools to address patients' psychological symptoms at end of life. When faced with psychological symptom management burden, caregivers need a range of coping skills as alternatives to escape-avoidance coping.

The effectiveness of a supportive educative group intervention on family caregiver burden of patients with heart failure.

PubMed

Etemadifar, Shahram; Bahrami, Masoud; Shahriari, Mohsen; Farsani, Alireza Khosravi

2014-05-01

Living with heart failure patients is a complex situation for family caregivers. Few studies have been conducted to examine the effects of interventional programs to ease this condition. The purpose of this study was to determine the effectiveness of a supportive educative group intervention in reducing family caregivers' burden of caregiving. This randomized clinical trail was conducted at a selective teaching hospital in Isfahan, Iran in 2012. The intervention consisted of four weekly multimedia training sessions of 2 h that included education and family support for 50 family caregivers. Caregiver burden was measured using the Zarit Burden Interview (ZBI). Paired t-test, Student's t-tests, and repeated measures analysis of variance (ANOVA) were used to test for significant differences of the mean scores of burden between the intervention and control groups over a 3-month period. The intervention was successful in reducing caregiver burden over time both at the end of the intervention period (P = 0.000) and 3 months after the intervention (P = 0.000). Nurses and other healthcare providers can use the findings of this study in order to implement effective programs to reduce family caregivers' challenges and to provide them more support.

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

PubMed

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

A Measure of Subjective Burden for Dementia Care: The Caregiving Difficulty Scale Intellectual Disability

ERIC Educational Resources Information Center

McCallion, P.; McCarron, M.; Force, L. T.

2005-01-01

It has been suggested in the literature on family caregiving for persons with Alzheimer's dementia (AD) that levels of objective and subjective burden among carers often predict institutionalization of the persons with AD. There is a paucity of measures to assess whether perceived burden among formal caregivers may also predict movement to more…

Background and design of the symptom burden in end-stage liver disease patient-caregiver dyad study.

PubMed

Hansen, Lissi; Lyons, Karen S; Dieckmann, Nathan F; Chang, Michael F; Hiatt, Shirin; Solanki, Emma; Lee, Christopher S

2017-10-01

Over half a million Americans are affected by cirrhosis, the cause of end-stage liver disease (ESLD). Little is known about how symptom burden changes over time in adults with ESLD and their informal caregivers, which limits our ability to develop palliative care interventions that can optimize symptom management and quality of life in different patient-caregiver dyads. The purpose of this article is to describe the background and design of a prospective, longitudinal descriptive study, "Symptom Burden in End-Stage Liver Disease Patient-Caregiver Dyads," which is currently in progress. The study is designed to (i) identify trajectories of change in physical and psychological symptom burden in adults with ESLD; (ii) identify trajectories of change in physical and psychological symptom burden in caregivers of adults with ESLD; and (iii) determine predictors of types of patient-caregiver dyads that would benefit from tailored palliative care interventions. We aim for a final sample of 200 patients and 200 caregivers who will be followed over 12 months. Integrated multilevel and latent growth mixture modeling will be used to identify trajectories of change in symptom burden, linking those changes to clinical events, and quality of life outcomes and characterizing types of patient-caregiver dyads based on patient-, caregiver-, and dyad-level factors. Challenges we have encountered include unexpected attrition of study participants, participants not returning their baseline questionnaires, and hiring and training of research staff. The study will lay the foundation for future research and innovation in ESLD, end-of-life and palliative care, and caregiving. © 2017 Wiley Periodicals, Inc.

Sleep Quality, Stress, Caregiver Burden, and Quality Of Life in Maternal Caregivers of Young Children With Bronchopulmonary Dysplasia

PubMed Central

Feeley, Christine A.; Turner-Henson, Anne; Christian, Becky J.; Avis, Kristin T.; Heaton, Karen; Lozano, David; Su, Xiaogang

2014-01-01

Little is known about the influence of sleep quality, stress, and caregiver burden on quality of life in maternal caregivers of young children with bronchopulmonary dysplasia (BPD). In 61 maternal caregivers (mean age 29.59 years) of young children with BPD (mean age 13.93 months), caregivers reported sleeping a mean of 5.8 hours, and significant correlations were found between sleep quality and depressive symptoms and stress, as well as an inverse correlation with quality of life. Sleep quality was found to be the most significant predictor of quality of life in maternal caregivers. PMID:23999065

Worry about performance: a unique dimension of caregiver burden.

PubMed

Lim, Wee Shiong; Cheah, Wee Kooi; Ali, Noorhazlina; Han, Huey Charn; Anthony, Philomena Vasantha; Chan, Mark; Chong, Mei Sian

2014-04-01

Recent studies that describe the multidimensionality of the Zarit Burden Interview (ZBI) challenge the traditional dual-factor paradigm of personal and role strains (Whitlatch et al., 1991). These studies consistently reported a distinct dimension of worry about caregiver performance (WaP) comprising items 20 and 21.The present study aims to compare WaP against conventional ZBI domains in a predominantly Chinese multi-ethnic Asian population. We studied 130 consecutive dyads of family caregivers and patients. Factor analysis of the 22-item ZBI revealed four factors of burden. We compared WaP (factor 4) with the other three factors, personal strain, and role strain via: internal consistency; inter-factor correlation; item-to-total ratio across Clinical Dementia Rating (CDR) stages; predictors of burden; and interaction effect on total ZBI score using two-way analysis of variance. WaP correlated poorly with the other factors (r = 0.05-0.21). It had the highest internal consistency (Cronbach's α = 0.92) among the factors. Unlike other factors, WaP was highly endorsed in mild cognitive impairment and did not increase linearly with disease severity, peaking at CDR 1. Multiple regression revealed younger caregiver age as the major predictor of WaP, compared with behavioral and functional problems for other factors. There was a significant interaction between WaP and psychological strain (p = 0.025). Our results corroborate earlier studies that WaP is a distinct burden dimension not correspondent with traditional ZBI domains. WaP is germane to many Asian societies where obligation values to care for family members are strongly influential. Further studies are needed to better delineate the construct of WaP.

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

PubMed

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.

Caregiver burden and psychosocial services in patients with early and late onset Alzheimer's disease.

PubMed

Grønning, Helene; Kristiansen, Susanne; Dyre, Dorte; Rahmani, Abdul; Gyllenborg, Jesper; Høgh, Peter

2013-07-01

The purpose of the study was to analyse caregiver burden and consumption of psychosocial services in a consecutive group of patients with early onset Alzheimer's disease (EOAD) compared with a matching group with late onset Alzheimer's disease (LOAD). This was a case-control study with 42 patients who were matched according to disease severity at the time of diagnosis. Caregivers in both groups were interviewed using the Neuro Psychiatric Inventory (NPI), the Activities of Daily Living (ADL) scale and the Resource Utilization in Dementia scale. The quantitative outcomes were compared statistically. The EOAD group had a significantly higher ADL score than the LOAD group. There was a trend towards caregivers in the LOAD group spending more time helping the patients, and they needed more social services than the EOAD group. NPI scores were not significantly different, but a tendency towards a higher caregiver burden in the EOAD group was observed. The higher caregiver burden in patients with EOAD--despite a better ADL function than LOAD patients--suggests that the existing psychosocial services might be particularly insufficient for caregivers in EOAD. The study was funded by a three-month scholarship grant from the research fund at Roskilde Hospital. not relevant.

Caregiver Burden in Semantic Dementia with Right- and Left-Sided Predominant Cerebral Atrophy and in Behavioral-Variant Frontotemporal Dementia.

PubMed

Koyama, Asuka; Hashimoto, Mamoru; Fukuhara, Ryuji; Ichimi, Naoko; Takasaki, Akihiro; Matsushita, Masateru; Ishikawa, Tomohisa; Tanaka, Hibiki; Miyagawa, Yusuke; Ikeda, Manabu

2018-01-01

Caregiver burden is a serious concern for family caregivers of dementia patients, but its nature is unclear in patients with semantic dementia (SD). This study aimed to clarify caregiver burden for right- (R > L) and left-sided (L > R) predominant SD versus behavioral-variant frontotemporal dementia (bvFTD) patients. Using the Japanese version of the Zarit Burden Interview (ZBI) and the Neuropsychiatric Inventory, we examined caregiver burden and behavioral and psychological symptoms of dementia (BPSD) in 43 first-visit outpatient/family caregiver dyads (bvFTD, 20 dyads; SD [L > R], 13 dyads; SD [R > L], 10 dyads). We found a significant difference in ZBI score between the 3 diagnostic groups. Post hoc tests revealed a significantly higher ZBI score in the bvFTD than in the SD (L > R) group. The ZBI scores in the SD (L > R) and SD (R > L) groups were not significantly different, although the effect size was large. Caregiver burden was significantly correlated with BPSD scores in all groups and was correlated with activities of daily living and instrumental activities of daily living decline in the bvFTD and SD (R > L) groups. Caregiver burden was highest in the bvFTD group, comparatively high in the SD (R > L) group, and lowest in the SD (L > R) group. Adequate support and intervention for caregivers should be tailored to differences in caregiver burden between these patient groups.

Caregiver Burden after Receiving a Diagnosis of an Autism Spectrum Disorder

ERIC Educational Resources Information Center

Stuart, Melissa; McGrew, John H.

2009-01-01

The study examined factors impacting caregiver burden following diagnosis of an autism spectrum disorder (ASD). Primary caregivers of children diagnosed with an ASD within the past 6 months (n = 78) were assessed on variables thought to influence outcomes associated with family stress as proposed within the double ABCX model of family adaptation,…

Family caregivers in rural Uganda: the hidden reality.

PubMed

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.

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

PubMed

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 < 0.05) impairment across all health outcomes, even after adjusting for several confounds (e.g., 3.26-point lower mental health 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.

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

PubMed

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 ( P<0.001). At 12 months caregiver strain correlated significantly (explained variance 63%, P=0.03) with caregiver HADS ( P=0.01), EuroQol-VAS ( P=0.02), and the CFQ ( P<0.001), all measured at 12 months after the cardiac arrest. Overall wellbeing of the caregivers 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.

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

PubMed

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.

Independence and cognition post-stroke and its relationship to burden and quality of life of family caregivers.

PubMed

Caro, Camila Caminha; Mendes, Paulo Vinicius Braga; Costa, Jacqueline Denubila; Nock, Lauren Jane; Cruz, Daniel Marinho Cezar da

2017-04-01

Stroke is a chronic disease responsible for changes in the functional capacity of the patients. Patient care is usually provided by family caregivers, but with great burden and negative impact on their quality of life. (1) To investigate whether a correlation existed between the levels of independence and cognition in stroke patients and the burden and quality of life of their caregivers; (2) to assess whether periods of injury, rehabilitation and care, and age of the stroke patients interfered with these correlations. This was a cross-sectional and correlational study that included 60 participants, of which 30 were post-stroke patients and 30 were their caregivers. The data collection instruments were the Mini Mental State Examination and the Functional Independence Measure for the post-stroke participants, and the Zarit Burden Interview Scale and the World Health Organization Quality of Life-BREF, for the caregivers. The Pearson's product-moment correlation was used for the data analysis. Independence and cognition showed no correlation with the burden and quality of life of the caregivers. We identified a strong positive correlation between independence and cognition (r = 0.882), and a moderate negative correlation between independence and rehabilitation period (r = -0.398) and between burden and quality of life of the caregivers (r = -0.414). Our data suggest the need for health interventions aimed not only at stroke patients, but also at their family caregivers, given the association between the burden and the low levels of quality of life of the caregivers.

Left dorsolateral prefrontal cortex atrophy is associated with frontal lobe function in Alzheimer's disease and contributes to caregiver burden.

PubMed

Matsuoka, Kiwamu; Yasuno, Fumihiko; Hashimoto, Akiko; Miyasaka, Toshiteru; Takahashi, Masato; Kiuchi, Kuniaki; Iida, Junzo; Kichikawa, Kimihiko; Kishimoto, Toshifumi

2018-05-01

Caregivers of patients with dementia experience physical and mental deterioration. We have previously reported a correlation between caregiver burden and the Frontal Assessment Battery (FAB) total scores of patients with Alzheimer's disease (AD), especially regarding the dependency factor from the Zarit Burden Interview. The present study aimed to identify an objective biomarker for predicting caregiver burden. The participants were 26 pairs of caregivers and patients with AD and mild-to-moderate dementia. Correlations between regional gray matter volumes in the patients with AD and the FAB total scores were explored by using whole-brain voxel-based morphometric analysis. Path analysis was used to estimate the relationships between regional gray matter volumes, FAB total scores, and caregiver burden based on the Zarit Burden Interview. The voxel-based morphometric revealed a significant positive correlation between the FAB total scores and the volume of the left dorsolateral prefrontal cortex. This positive correlation persisted after controlling for the effect of general cognitive dysfunction, which was assessed by using the Mini-Mental State Examination. Path analysis revealed that decreases in FAB scores, caused by reduced frontal lobe volumes, negatively affected caregiver burden. The present study revealed that frontal lobe function, based on FAB scores, was affected by the volume of the left dorsolateral prefrontal cortex. Decreased scores were associated with greater caregiver burden, especially for the dependency factor. These findings may facilitate the development of an objective biomarker for predicting caregiver burden. Copyright © 2017 John Wiley & Sons, Ltd.

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

PubMed Central

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

Burdens and difficulties experienced by caregivers of children and adolescents with schizophrenia-spectrum disorders: a qualitative study.

PubMed

Knock, Jane; Kline, Emily; Schiffman, Jason; Maynard, Ashley; Reeves, Gloria

2011-11-01

The purpose of this qualitative study was to investigate the burdens and difficulties associated with the experience of caring for youth with schizophrenia-spectrum disorders. Ten caregivers participated in a modified version of the Knowledge about Schizophrenia Illness interview. The most common areas of general difficulties reported by caregivers were emotional burdens and the everyday practical demands and sacrifices required in caring for their dependents. RESULTS also suggested high levels of burden for caregivers concerning difficulties with mental health services. Additional work is needed to learn more about the challenges that caregivers of youth with schizophrenia-spectrum disorders are facing, as well as to develop empirically based strategies for helping these caregivers and their dependents. © 2011 Blackwell Publishing Asia Pty Ltd.

Caregiving responsibilities and burden among older people by HIV status and other determinants in Uganda.

PubMed

Mugisha, Joseph; Scholten, Francien; Owilla, Sebastian; Naidoo, Nirmala; Seeley, Janet; Chatterji, Somnath; Kowal, Paul; Boerma, Ties

2013-01-01

Older caregivers have major caregiving responsibilities in countries severely affected by the HIV epidemic, but little is known about their own health and well-being. We conducted this study to assess the association of caregiving responsibilities and self-perceived burden with caregivers' health, HIV status, background characteristics and care-receiving among older people in South Western Uganda. Men and women aged 50 years and older were recruited from existing cohort studies and clinic registers and interviewed at home. Health was measured through a composite score of health in eight domains, anthropometry and handgrip strength. Summary measures of caregiving responsibilities and self-reported burden were used to analyse the main associations. There were 510 participants, including 198 living with HIV. Four fifths of women and 66% of men were caregivers. Older respondents with no care responsibility had poorer scores on all health indicators (self-reported health score, body mass index and grip strength). Having a caregiving responsibility was not associated with poorer health status or quality of life. Notably, HIV-infected people, whether on antiretroviral treatment (ART) or not, had similar caregiving responsibilities and health status as others. The self-reported burden associated with caregiving was significantly associated with a poorer health score. One third of female caregivers were the single adult in the household with larger caregiving responsibilities. Many of these women are in the poorest wealth quartile of the households in the study and are therefore more likely to need assistance. Physical and financial supports were received by 70% and 63%, respectively. Those with larger caregiving responsibilities more frequently received support. Caregiving responsibilities were associated with better health status, greater satisfaction and quality of life. Older HIV-infected people, whether on ART or not, had similar caregiving responsibilities and self

Burden incurred by patients and their caregivers after outpatient surgery: a prospective observational study.

PubMed

Manohar, Asha; Cheung, Kristin; Wu, Christopher L; Stierer, Tracey S

2014-05-01

The burden of patients and their caregivers after outpatient surgery has not been fully examined. The number of outpatient surgeries has dramatically increased in the last several years, particularly in the orthopaedic sector. Patients undergoing outpatient orthopaedic procedures may be expected to have more postdischarge pain than those undergoing nonorthopaedic outpatient procedures. In light of this, assessment of patient and caregiver expectations and actual burden after discharge is of importance. We assessed the impact of outpatient surgery on recovery of patients and their caregivers in the postoperative period by determining (1) expected versus actual time to resume daily activities, including work; (2) expected versus actual recovery at 7 and 30 days postoperatively; and (3) the number of caregivers that felt emotional or physical disturbances from caring for outpatients. Forty-four adult patients undergoing outpatient surgical procedures and their primary caregivers were enrolled in this prospective survey study, of which 30% were orthopaedic patients. Surveys assessing postoperative recovery were given to patients at six time points, on Postoperative Days 0 to 3, 7, and 30. Surveys assessing the burden of informal caregiving were given to each patient's primary caregiver at four time points, on Postoperative Days 1 to 3 and 7. The enrollment rate was 79% (44 enrolled of 56 approached) and the survey response rate was 100% for patients and 93% (41 of 44) for caregivers. We found that 16 of 44 patients (36%) needed more time than originally anticipated to resume their daily activities and three of 29 patients (10%) needed more time off from work than originally anticipated. Patients were approximately 66% and 88% fully recovered 7 and 30 days after surgery, respectively. The primary caregivers noted disturbances in emotional (nine of 43, 21%) and physical (17 of 43, 40%) aspects of their daily lives while providing care for patients. Our surveyed

Influence of personality on depression, burden, and health-related quality of life in family caregivers of persons with dementia.

PubMed

Kim, Sun Kyung; Park, Myonghwa; 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

2017-02-01

Personality may predispose family caregivers to experience caregiving differently in similar situations and influence the outcomes of caregiving. A limited body of research has examined the role of some personality traits for health-related quality of life (HRQoL) among family caregivers of persons with dementia (PWD) in relation to burden and depression. Data from a large clinic-based national study in South Korea, the Caregivers of Alzheimer's Disease Research (CARE), were analyzed (N = 476). Path analysis was performed to explore the association between family caregivers' personality traits and HRQoL. With depression and burden as mediating factors, direct and indirect associations between five personality traits and HRQoL of family caregivers were examined. Results demonstrated the mediating role of caregiver burden and depression in linking two personality traits (neuroticism and extraversion) and HRQoL. Neuroticism and extraversion directly and indirectly influenced the mental HRQoL of caregivers. Neuroticism and extraversion only indirectly influenced their physical HRQoL. Neuroticism increased the caregiver's depression, whereas extraversion decreased it. Neuroticism only was mediated by burden to influence depression and mental and physical HRQoL. Personality traits can influence caregiving outcomes and be viewed as an individual resource of the caregiver. A family caregiver's personality characteristics need to be assessed for tailoring support programs to get the optimal benefits from caregiver interventions.

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

PubMed

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 multidimensional burden of informal caregivers in primary malignant brain tumor.

PubMed

Bayen, Eléonore; Laigle-Donadey, Florence; Prouté, Myrtille; Hoang-Xuan, Khê; Joël, Marie-Eve; Delattre, Jean-Yves

2017-01-01

Informal caregivers (ICs) provide care and improve the quality of life of patients with malignant brain tumor. We analyze the impact of their involvement on themselves from a triple perspective. Home-dwelling patients with primary malignant brain tumor underwent a medical examination. ICs burden was evaluated by a self-administered postal questionnaire. Objective burden (Informal Care Time, ICT), subjective burden (Zarit Burden Inventory, ZBI), and financial burden (valuation of lost earnings using the Replacement and Opportunity Cost Methods, RCM, OCM) were evaluated. ICs (N = 84) were principally women (87 %) and spouses (64 %), of mean age 55 years, who assisted patients of mean age 53 years and with a mean KPS score of 61 (range = 30-90, med = 60). Subjective burden was moderate (mean ZBI = 30). Objective burden was high (mean ICT = 11.7 h/day), mostly consisting of supervision time. Higher subjective and objective burden were associated with poorer functional status (KPS) but not with a higher level of cognitive disorders in multivariate analyses. Other independent associated factors were bladder dysfunction and co-residency for objective burden and working and a poor social network for subjective burden. The 56 working ICs made work arrangements (75 %) that impacted their wages (36 %) and careers (30 %). Financial burden due to uncompensated caregiving hours for Activities of Daily Living had a mean monetary value from Є677(RCM) to Є1683(OCM) per month (i.e., ranging from Є8124 to Є20196 per year). IC burden is multidimensional. Greater provision of formal care, more IC support programs, and economic interventions targeting IC employment and finances are needed.

Use of Zarit Burden Interview in analysis of family caregivers' perception among Taiwanese caring with hospitalized relatives.

PubMed

Yeh, Pi-Ming; Chang, Yuanmay

2015-10-01

This study was conducted to examine the relationships between family caregivers' perception of caregiving and its influencing factors among Taiwanese with hospitalized relatives. The study used a cross-sectional and descriptive correlational design. A convenience sample of 200 primary caregivers of hospitalized patients diagnosed with cancer, stroke and chronic illness was recruited in a Taiwanese Medical Center; this focus was chosen because cancer, stroke and chronic illness generally require long term care. Data were collected by structured questionnaires. Pearson product-moment correlation and stepwise multiple regression analyses were used to analyse the results of this study. Family caregivers who lacked family support and whose patients' ADL (activities of daily living) dependency was increasing experienced a greater caregiving burden. Family caregivers who had better psychological well-being, better quality of relationship and more caregiving knowledge experienced a lower caregiving burden. Quality of relationship, lack of family support and patients' ADL dependency accounted for 43% of the Zarit Burden Interview variance. The results indicated that family caregivers' perception of caregiving included sacrifice, strain, embarrassment, anger and loss of control. It is vital for nurses to understand these caregiving perceptions and their related factors to provide a holistic care plan. © 2014 Wiley Publishing Asia Pty Ltd.

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

PubMed

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.

Caregiver burden associated with behavioral and psychological symptoms of dementia in elderly people in the local community.

PubMed

Matsumoto, Naomi; Ikeda, Manabu; Fukuhara, Ryuji; Shinagawa, Shunichiro; Ishikawa, Tomohisa; Mori, Takaaki; Toyota, Yasutaka; Matsumoto, Teruhisa; Adachi, Hiroyoshi; Hirono, Nobutsugu; Tanabe, Hirotaka

2007-01-01

Despite many studies about the association between caregiver burden and behavioral and psychological symptoms of dementia (BPSD), there have been no population-based studies to evaluate caregiver burden associated with each BPSD. To evaluate caregiver burden associated with the individual BPSD in elderly people living in the community. The subjects were 67 participants with dementia living with their caregivers (diagnosed in the third Nakayama study): 51 Alzheimer's disease, 5 vascular dementia and 11 other. The Neuropsychiatric Inventory (NPI) and NPI Caregiver Distress Scale (NPI-D) were used to assess subjects' BPSD and related caregiver distress, respectively. In the subjects exhibiting BPSD, aberrant motor behavior had the highest mean NPI score, and depression/dysphoria had the lowest. Agitation/aggression had the highest mean NPI-D score, and euphoria/elation had the lowest. Delusion, agitation/aggression, apathy/indifference, irritability/lability and aberrant motor behavior showed a correlation between the NPI and NPI-D scores. The burden associated with BPSD is different for each symptom and does not always depend on frequency and severity of BPSD. These findings suggest that some symptoms, such as agitation/aggression and irritability/lability, may affect the caregivers significantly, although their frequency and severity are low. Copyright (c) 2007 S. Karger AG, Basel.

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

PubMed

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.

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

PubMed

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 <12g/dL and presence of 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 <12g/dL (OR, 2.38; 95% CI, 1.14-4.99) were associated with an increased probability of mild to severe caregiver burden. The model achieved a good fit (Hosmer-Lemeshow's p=0.196) and discrimination (area under the curve [AUC]=0.742; bias-corrected AUC=0.737). Based on this, 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%; p<0.001). ECOG performance status and haemoglobin were associated with increased caregiver burden among elderly patients 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.

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

ERIC Educational Resources Information Center

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…

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

PubMed

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.

PubMed

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.

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

PubMed

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.

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

PubMed

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 < 0.05, Adjusted R 2  = 0.06), and shows a trend association with lower practical impact (β = - 0.09, p < 0.10, Adjusted R 2  = 0.05). The matched cohort analysis also revealed that people on extended half-life factor product had lower Emotional Impact and Practical Impact scores (t = - 2.95 and - 2.94, respectively, p < 0.05 in both cases). No differences were detected on the PedsQL or the WPAI. The reduced required frequency of 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.

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

PubMed

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.

PubMed

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.

[The effect of disability of the aged patient on the level of caregiving burden by the family].

PubMed

Topinková, E; Neuwirth, J

1997-02-12

A growing number of dependent elderly people is cared for at home by family members. However, long-term caregiving may become an intolerable strain for some families and lead to failure of family care. The aim of the study was to examine if level of physical and mental disability of the patient influences the extent of perceived caregiver burden representing risk factor for negative outcome. 128 elderly patients with disability and dependency (37 men, 91 women, average age 79.9 +/- 6.9 yrs) and 128 their primary caregivers, mostly family members (28.9% men, 71.1% women) were evaluated. Functional status of care recipient was assessed by means of Barthel ADL Index (mean = 70.9 +/- 26.5), IADL Test (mean = 31.4 +/- 23.5) and Mini-Mental State Exam, MMSE (mean = 20.4 +/- 6.5). Average score of Caregiver Burden Interview (CBI) was 34.7 +/- 18.8. According to CBI, 40.6% of caregivers were found under high or even extremely hig level of stress. Level of perceived burden correlated significantly with physical and mental disability level, in decreasing order for IADL, ADL and MMSE (rs = 0.582-0.708, p < 0.001). Caregiver burden of family caregivers is significantly related to the level of functioning and cognitive impairment of care recipient, particularly to his/her ability to perform instrumental activities. Functional decline of elderly patient represents a risk factor which contributes to negative caregiving outcome and institutional placement.

The effectiveness of a supportive educative group intervention on family caregiver burden of patients with heart failure

PubMed Central

Etemadifar, Shahram; Bahrami, Masoud; Shahriari, Mohsen; Farsani, Alireza Khosravi

2014-01-01

Background: Living with heart failure patients is a complex situation for family caregivers. Few studies have been conducted to examine the effects of interventional programs to ease this condition. The purpose of this study was to determine the effectiveness of a supportive educative group intervention in reducing family caregivers’ burden of caregiving. Materials and Methods: This randomized clinical trail was conducted at a selective teaching hospital in Isfahan, Iran in 2012. The intervention consisted of four weekly multimedia training sessions of 2 h that included education and family support for 50 family caregivers. Caregiver burden was measured using the Zarit Burden Interview (ZBI). Paired t-test, Student's t-tests, and repeated measures analysis of variance (ANOVA) were used to test for significant differences of the mean scores of burden between the intervention and control groups over a 3-month period. Results: The intervention was successful in reducing caregiver burden over time both at the end of the intervention period (P = 0.000) and 3 months after the intervention (P = 0.000). Conclusions: Nurses and other healthcare providers can use the findings of this study in order to implement effective programs to reduce family caregivers’ challenges and to provide them more support. PMID:24949057

Confirmatory factor analysis of a brief version of the Zarit Burden Interview in Black and White dementia caregivers.

PubMed

Flynn Longmire, Crystal V; Knight, Bob G

2011-08-01

Although the Zarit Burden Interview (ZBI) is one of the most extensively used measures in research for caregiver burden, few researchers have examined its factor structure. Furthermore, though the ZBI has also been used in cross-group comparisons of burden, there have not been studies of whether or not it measures burden equally across various groups. Therefore, this study considers the psychometric properties of a brief version of the ZBI with particular attention to its factor structure and metric equivalence across two racial groups. Distribution, reliability, and confirmatory factor analyses were performed with a 14-item three-factor ZBI factor model in a sample of 175 Black and 225 White caregivers of family members with dementia. The 14 ZBI items were reliable and fairly normally distributed for both groups. The three-factor model fits the data and was invariant across the Black and White caregivers for number of factors, factor loadings, and factor covariances. These findings contribute to the literature on the factor structure of the ZBI and provide new data on the invariance of the ZBI across two racial/ethnic groups of caregivers. This study provides support for the validity of findings that compare the burden scores of Black and White caregivers in studies utilizing the ZBI. The 14-item version also offers a more parsimonious way to measure burden in clinical settings, potentially increasing screening opportunities when caregiver contact time is limited.

Economic burden of family caregiving for elderly population in southern Ghana: the case of a peri-urban district.

PubMed

Nortey, Stephen Tettey; Aryeetey, Genevieve Cecilia; Aikins, Moses; Amendah, Djesika; Nonvignon, Justice

2017-01-14

Health systems in low and lower-middle income countries, particularly in sub-Sahara Africa, often lack the specialized personnel and infrastructure to provide comprehensive care for elderly/ageing populations. Close-to-client community-based approaches are a low-cost way of providing basic care and social support for elderly populations in such resource-constrained settings and family caregivers play a crucial role in that regard. However, family caregiving duties are often unremunerated and their care-related economic burden is often overlooked though this knowledge is important in designing or scaling up effective interventions. The objective of this study, therefore, was to estimate the economic burden of family caregiving for the elderly in southern Ghana. The study was a retrospective cross-sectional cost-of-care study conducted in 2015 among family caregivers for elderly registered for a support group in a peri-urban district in southern Ghana. A simple random sample of 98 respondents representative of the support group members completed an interviewer-administered questionnaire. Costs were assessed over a 1-month period. Direct costs of caregiving (including out-of-pocket costs incurred on health care) as well as productivity losses (i.e. indirect cost) to caregivers were analysed. Intangible costs were assessed using the 12-item Zarit burden interview (ZBI) tool and the financial cost dimension of the cost of care index. The estimated average cost of caregiving per month was US$186.18, 66% of which was direct cost. About 78% of the family caregivers in the study reported a high level of caregiving burden (as measured with the ZBI) with females reporting a relatively higher level than males. Further, about 87% of the family caregivers reported a high level of financial stress as a result of caregiving for their elderly relative. The study shows that support/caregiving for elderly populations imposes economic burden on families, potentially influencing the

Validation of Yoruba Version of Family Burden Interview Schedule (Y-FBIS) on Caregivers of Schizophrenia Patients

PubMed Central

Lasebikan, Victor Olufolahan

2012-01-01

Objective. To validate the Yoruba version of Family Burden Interview Schedule (Y-FBIS) for assessing the burden on caregivers of persons with schizophrenia. Methods. Three hundred and sixty-eight dyads of persons with schizophrenia and their caregivers were recruited from a psychiatric outpatient clinic. The (Y-FBIS) and the Yoruba version of the GHQ-12 (Y-GHQ-12) were applied to the caregivers. Patients' level of social functioning was assessed using the Global Assessment of Functioning scale. Results. All (368) caregivers were used for tests of internal consistency, 180 for interrater reliability, and another 180 for test-retest reliability. Internal consistency of the Y-FBIS was demonstrated by a significant Cronbach α of between 0.62 and 0.82 for each item. Concurrent validity of the Y-FBIS was illustrated by its significant positive correlation with Y-GHQ-12 (r = 0.633 , P < 0.01). Split-half reliability was 0.849. Intraclass correlation coefficient for the total score of Y-FBIS was 0.849 at 95% confidence interval. Test-retest reliability of individual scales ranged from 0.780 to 0.874 and was 0.830 for total objective scale score. Convergent validity was shown by the significant positive correlation (r = 0.83) between the objective burden score and subjective burden score of Y-FBIS. ROC curve area was 0.981. Conclusion. The Y-FBIS is a valid, reliable, and sensitive instrument for assessing the burden on caregivers of persons with schizophrenia in Nigeria. PMID:23738196

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

PubMed

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).

The care of the informal caregiver's burden by the Spanish public system of social welfare: a review.

PubMed

Garcés, Jorge; Carretero, Stephanie; Ródenas, Francisco; Vivancos, Mariano

2010-01-01

This work analyzes the public social services system developed in Spain to attend dependent persons and their informal caregivers, examining in a more detailed way the current capacity of the Spanish public In-Home Help Service (HHS) to meet the demands of dependent elderly persons and its impact on their informal caregiver's burden. We begin with a brief introduction of the services by the Spanish public social services system developed to attend dependency; next, the evolution of the Spanish public HHS is described in a thorough way to identify the pros and cons of this service regarding the informal caregivers' burden of dependent elders. Finally, recommendations are proposed to redesign and restructure this public in-home service to lessen the informal caregiver's burden. Copyright (c) 2009 Elsevier Ireland Ltd. All rights reserved.

Burden and quality of life among caregivers of children and adolescents with meningomyelocele: measuring the relationship to anxiety and depression.

PubMed

Valença, M P; de Menezes, T A; Calado, A A; de Aguiar Cavalcanti, G

2012-07-01

This study aimed to assess the burden and quality of life (Qol) of primary caregivers of children/adolescents with meningomyelocele, taking into account the relationship to anxiety and depression symptoms. A cross-sectional approach was taken to analyze the health-related Qol and burden using the Short Form-36 Survey (SF-36) and the caregiver burden scale (CBS), respectively. Depressive and anxiety symptoms were investigated using the Beck Inventories. The Heckman two-step method was used to deal with the selection bias problem. A total of 43 primary caregivers were enrolled in the study. Most of the caregivers were mothers with preliminary education, living in consensual union. Lower scores in general health and vitality were reported in the SF-36. The mean global CBS score was 2.2. Majority of the volunteers (55.8%) were considered non-depressive. There were both positive and negative correlations between the scores of both Beck Inventories and most dimensions of the CBS and SF-36. The Heckman method showed a higher burden among caregivers who had children with fecal incontinence, were living together with a partner, were unemployed and had lower income (P<0.05). The primary caregivers of children and adolescents with myelomeningocele reported burden and a lower Qol. There were more anxiety and depression symptoms in subjects with higher burden and impaired Qol. Caregivers had a higher burden if they were living together with a partner, were unemployed, had low income and had care recipients with fecal incontinence.

Responsibility and burden from the perspective of seniors' family caregivers: a qualitative study in Shanghai, China.

PubMed

Zeng, Li; Zhu, Xiaoping; Meng, Xianmei; Mao, Yafen; Wu, Qian; Shi, Yan; Zhou, Lanshu

2014-01-01

This study aimed to explore the experience of seniors' family caregivers with regarding the responsibility, burden and support needs during caregiving in Shanghai, China. An exploratory, descriptive, qualitative design was used and a semi-structure interview was conducted. A convenience sample of 11 participants in two community service centers in Shanghai was recruited. Data saturation guided the size of the sample. The Colaizzi method of empirical phenomenology was used for interviewing and analyzing data obtained from 11 caregivers. Three major themes were found: It is a hard work; It is my responsibility; Social support is not enough. The findings of the study are practical and helpful for health care providers to develop appropriate caregiver support services, to balance the responsibility and burden of caregivers, and to consider the factors influencing the utility of support services.

[Impact of a psychosocial intervention in caregiver burden of children with cerebral palsy].

PubMed

Martínez Lazcano, Félix; Avilés Cura, Manuel; Ramírez Aranda, José Manuel; Riquelme Heras, Héctor; Garza Elizondo, Teófilo; Barrón Garza, Fabiola

2014-10-01

To demonstrate that problem-solving therapy is effective in reducing the burden on caregivers of children with cerebral palsy. Randomized clinical trial. Check primary care within a private nonprofit association. 140caregivers divided into control group (CG) and experimental group (EG). We performed in both groups a psychosocial intervention with a frequency of one session per week for three weeks to complete 120minutes. In the EG performed a shortened form of problem-solving therapy with a focus on caregiver burden and the CG performed an educational intervention focusing on respiratory diseases. The response variable corresponds to the score obtained by Zarit questionnaire. The independent variable accounted for psychosocial intervention. In the EG according to Zarit questionnaire score was obtained by averaging 45.0 points pre intervention against 45.3 points in the CP after intervention Zarit was obtained by averaging 29.8 points in the EG and 44.3 points in the CG (P<.0001). The catalog groups according to their score Zarit in charge: none, mild, moderate and severe impact differences were found in the different intervention categories (Wilcoxon test Z=6.281, P<.00001). Problem solving therapy is effective in reducing the burden on caregivers of children with cerebral palsy. Copyright © 2013 Elsevier España, S.L.U. 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.

PubMed

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.

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

PubMed

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, P<.001), MDS-UPDRS II score (β=.21, P<.001), and MDS-UPDRS III score (β=.07, P=.004). Regarding caregiver burden, the MDS-UPDRS II score (β=.54, P=.007) was the most influential factor. The present study shows a relationship between quality of life for the subject with Parkinson'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.

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

PubMed

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

Attenuation of neuropsychiatric symptoms and caregiver burden in Alzheimer's disease by motor intervention: a controlled trial.

PubMed

Stella, Florindo; Canonici, Ana Paula; Gobbi, Sebastião; Galduroz, Ruth Ferreira Santos; Cação, João de Castilho; Gobbi, Lílian Teresa Bucken

2011-01-01

To analyze the effects of motor intervention on the neuropsychiatric symptoms of Alzheimer's disease and on the caregivers' burden. This is a controlled trial evaluating the effects of a motor intervention program on the neuropsychiatric symptoms. The intervention was performed on community patients from two university centers specializing in physical exercise for the elderly. Patients with Alzheimer's disease were divided into two groups: sixteen received the motor intervention and sixteen controls (five controls were excluded because of clinical intercurrences). Aerobic exercises (flexibility, strength, and agility) and functional balance exercises were conducted over six months for 60 minutes three times per week. Psychopathological features of patients were evaluated with the Neuropsychiatric Inventory and Cornell Scale for Depression in Dementia. Caregivers were evaluated using the Neuropsychiatric Inventory-Distress and Burden Interview. A two-way analysis of variance (ANOVA) was applied to observe interactions (pre- vs. post-intervention; participants vs. controls). Patients from the intervention presented a significant reduction in neuropsychiatric conditions when compared to controls (Neuropsychiatric Inventory: F: 11.12; p = 0.01; Cornell Depression scale: F: 11.97; p = 0.01). The burden and stress of caregivers responsible for patients who participated in the intervention significantly decreased when compared to caregivers responsible for controls (Neuropsychiatric Inventory-Distress: F: 9.37; p = 0.01; Burden Interview: F: 11.28; p = 0.01). Aerobic exercise was associated with a reduction in the neuropsychiatric symptoms and contributed to attenuate the caregivers' burden. However, the researchers were not blinded to the patient's intervention status, which constitutes an important limitation of this study.

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.

PubMed

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.

PubMed

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

Responsibility and burden from the perspective of seniors’ family caregivers: a qualitative study in Shanghai, China

PubMed Central

Zeng, Li; Zhu, Xiaoping; Meng, Xianmei; Mao, Yafen; Wu, Qian; Shi, Yan; Zhou, Lanshu

2014-01-01

Objectives: This study aimed to explore the experience of seniors’ family caregivers with regarding the responsibility, burden and support needs during caregiving in Shanghai, China. Materials and methods: An exploratory, descriptive, qualitative design was used and a semi-structure interview was conducted. A convenience sample of 11 participants in two community service centers in Shanghai was recruited. Data saturation guided the size of the sample. The Colaizzi method of empirical phenomenology was used for interviewing and analyzing data obtained from 11 caregivers. Results: Three major themes were found: It is a hard work; It is my responsibility; Social support is not enough. Conclusion: The findings of the study are practical and helpful for health care providers to develop appropriate caregiver support services, to balance the responsibility and burden of caregivers, and to consider the factors influencing the utility of support services. PMID:25126186

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

PubMed

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.

Caring for disabled older adults with musculoskeletal conditions: A transactional model of caregiver burden, coping strategies, and depressive symptoms.

PubMed

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

This study investigated the mediating role of coping strategies in the relationship between caregiver burden and depressive symptoms among family caregivers caring for disabled older adults with musculoskeletal (MSK) conditions. The cross-sectional data were from a quota sampling of 494 pairs of disabled older adults and their primary family caregivers in Shanghai, China. The disabled older adults had MSK conditions and limitations in activities of daily living. The mean ages of the older adults and their caregivers were 83.9 and 62.6 years. Path analysis was conducted to test the proposed hypotheses. Caregivers of adults with MSK conditions were more likely to use active coping to handle time dependence (β [SD]=0.182 [0.055]) and physical burden (β [SD]=0.226 [0.071]) and to use avoidant coping to handle developmental burden (β [SD]=0.414 [0.061]). Both coping strategies were used to handle social burden(active: β [SD]=0.179 [0.078]; avoidant: β [SD]=0.241 [0.073]). Experiencing emotional burden reduced the likelihood of using both coping strategies (active: β [SD]=-0.266 [0.066]; avoidant: β [SD]=-0.373 [0.062]). Active coping had a protective impact on depressive symptoms (β [SD]=-0.228 [0.050]), whereas avoidant coping had an adverse impact on depressive symptoms (β [SD]=0.232 [0.053]). The findings confirm the mediating effects of coping strategies in the relationship between caregiver burden and depressive symptoms. Copyright © 2016. Published by Elsevier Ireland Ltd.

Impact of donepezil hydrochloride on the care burden of family caregivers of patients with Alzheimer's disease.

PubMed

Hashimoto, Mamoru; Yatabe, Yusuke; Kaneda, Keiichiro; Honda, Kazuki; Ikeda, Manabu

2009-12-01

To evaluate the impact of donepezil hydrochloride on the care burden on family members of patients with Alzheimer's disease (AD). At present, donepezil is the only drug approved for the treatment of AD in Japan. Although the care burden on primary caregivers of AD patients comprises both physical and psychological burdens and donepezil is recognized to improve cognitive dysfunction and associated symptoms, there are few data on the effects of the drug on the care burden. Of the uninstitutionalized AD patients who visited a dementia clinic between June 2008 and May 2009 with their primary family caregivers, 416 subjects who satisfied the enrollment criteria were registered for the study. All participants provided informed consent. Assessment included changes in scores on the Japanese version of the Zarit Caregiver Burden Interview (J-ZBI) and the Mini-Mental State Examination (MMSE), as well as the presence of behavioral and psychological symptoms of dementia (BPSD). Caregivers answered the questionnaires at baseline and after 12 weeks treatment with donepezil (starting dose 3 mg, p.o., once daily, followed by 5 mg after 1 or 2 weeks). There were significant changes in mean scores on the J-ZBI (-1.9 +/- 9.5; P < 0.01) and MMSE (+0.9 +/- 2.9; P < 0.01) from baseline to Week 12, without significant correlation between these two scores. In patients with BPSD, there was a significant decrease in J-ZBI scores over the 12 weeks (P = 0.013); in contrast, in patients without BPSD, the decrease in the J-ZBI score did not reach statistical significance (P = 0.418). The results indicate that donepezil improves cognitive function and some of the BPSD. As a possible consequence of improvements in BPSD, donepezil may also reduce caregivers' burden.

Examining Live-In Foreign Domestic Helpers as a Coping Resource for Family Caregivers of People With Dementia in Singapore.

PubMed

Basnyat, Iccha; Chang, Leanne

2017-09-01

In Singapore, the responsibility of caring for persons with dementia falls on family members who cope with a long-term caregiver burden, depending on available support resources. Hiring foreign domestic workers to alleviate caregiver burden becomes a prevalent coping strategy that caregivers adopt. This strategy allows caregivers to provide home care as part of fulfilling family obligations while managing the caregiver burden. This study aimed to investigate primary caregivers' relationship with hired support and its impact on coping with caregiver burden. Twenty in-depth interviews were conducted with primary caregivers who hired live-in domestic helpers to take care of their family members with dementia. The findings revealed that caregivers perceived the normative obligations to provide home care to family members with dementia. They sought support from domestic helpers to cope with physical and mental burnout, disruption of normal routines, and avoidance of financial strain. A mutual-support relationship was built between caregivers and domestic helpers through trust and interdependence. The presence of domestic helpers as a coping resource reveals the positive outcomes of problem-, emotional-, and diversion-focused coping. This study illustrates that coping strategies are employed in different ways depending on the needs of caregivers, access to infrastructure, cultural expectations, and available resources.

Perceived mood, health, and burden in female Mexican American family cancer caregivers.

PubMed

Wells, Jo Nell; Cagle, Carolyn Spence; Marshall, David; Hollen, Mary Luna

2009-07-01

Female family caregivers of various global cultures provide basic care in health, social, emotional, and financial domains for family members with cancer and may sacrifice their own health to do so. To learn about role-related mood, health status self-perceptions, and burden of one cultural group, we used qualitative and quantitative approaches to study 34 Mexican American (MA) women who provided care for an ill family member with cancer. We report quantitative data on study variables and make comparisons with caregiver qualitative reports. Implications for health planning, service delivery, and future research with underserved, minority female caregivers are presented.

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

PubMed

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.

PubMed

Win, Khin Khin; Chong, Mei Sian; Ali, Noorhazlina; Chan, Mark; Lim, Wee Shiong

2017-01-01

With >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. We 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. Oldest-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. Our 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 by this rapidly growing group of caregivers.

The Impact of Respite Programming on Caregiver Resilience in Dementia Care: A Qualitative Examination of Family Caregiver Perspectives

PubMed Central

Roberts, Emily; Struckmeyer, Kristopher M.

2018-01-01

Family members with a relative with dementia often experience what has been called the “unexpected career of caregiver” and face multifaceted, complex, and stressful life situations that can have important consequences. This exploratory study was designed to address this major public health challenge through the lens of caregiver resilience and caregiver respite programming. While many caregivers report that they derive significant emotional and spiritual rewards from their caregiving role, many also experience physical and emotional problems directly related to the stress and demands of daily care. One way to alleviate these demands is the growing respite care field, providing services in a variety of settings for caregiver. Through qualitative analysis from face-to-face interviews with 33 family caregivers of individuals with dementia, several themes emerged describing the path to caregiver resilience which include family dynamics, isolation, financial struggles, seeking respite, and acceptance. While much research focuses on a caregiving burden perspective, the innovation of the present study is applying the resilience framework to outcomes from respite programming. PMID:29424252

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

PubMed

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.

Functional dependence and caregiver burden in Alzheimer's disease: a controlled trial on the benefits of motor intervention.

PubMed

Canonici, Ana Paula; Andrade, Larissa Pires de; Gobbi, Sebastião; Santos-Galduroz, Ruth Ferreira; Gobbi, Lílian Teresa Bucken; Stella, Florindo

2012-09-01

Cognitive decline has a negative impact on functional activities in Alzheimer's disease. Investigating the effects of motor intervention with the intent to reduce the decline in functionality is an expected target for patients and caregivers. The aim of this study was to verify if a 6-month motor intervention programme promoted functionality in Alzheimer's patients and attenuated caregivers' burden. The sample comprised 32 community patients with Alzheimer's disease and their 32 respective caregivers. Patients were divided into two groups: 16 participated in the motor intervention programme and 16 controls. Subjects performed 60 minutes of exercises, three times per week during the 6-month period, to improve flexibility, strength, agility and balance. Caregivers followed the procedures with their patients during this period. Functionality was evaluated by the Berg Functional Balance Scale and the Functional Independence Measure. Caregivers completed the Neuropsychiatric Inventory Caregiver Distress Scale and the Zarit Carer Burden Scale. Two-way ANOVA was used to verify the interaction between time (pre- and post-intervention) and the motor intervention program. While patients in the motor programme preserved their functionality, as assessed by the Functional Independence Measure, the controls suffered a relative decline (motor intervention group: from 109.6 to 108.4 vs controls: from 99.5 to 71.6; P= 0.01). Patients from motor intervention also had better scores than the controls on functional balance assessed by Berg scale (F: 22.2; P= 0.001). As assessed by the Neuropsychiatric Inventory and Zarit scale, burden was reduced among caregivers whose patients participated in the motor intervention programme compared with caregivers whose patients did not participate in this programme (Neuropsychiatric Inventory, caregiver's part: F: 9.37; P= 0.01; Zarit: F: 11.28; P= 0.01). Patients from the motor intervention group showed reduced functional decline compared to the

Attenuation of neuropsychiatric symptoms and caregiver burden in Alzheimer's disease by motor intervention: a controlled trial

PubMed Central

Stella, Florindo; Canonici, Ana Paula; Gobbi, Sebastião; Santos-Galduroz, Ruth Ferreira; de Castilho Cação, João; Gobbi, Lílian Teresa Bucken

2011-01-01

OBJECTIVE: To analyze the effects of motor intervention on the neuropsychiatric symptoms of Alzheimer's disease and on the caregivers' burden. DESIGN: This is a controlled trial evaluating the effects of a motor intervention program on the neuropsychiatric symptoms. SETTING: The intervention was performed on community patients from two university centers specializing in physical exercise for the elderly. SUBJECTS: Patients with Alzheimer's disease were divided into two groups: sixteen received the motor intervention and sixteen controls (five controls were excluded because of clinical intercurrences). INTERVENTIONS: Aerobic exercises (flexibility, strength, and agility) and functional balance exercises were conducted over six months for 60 minutes three times per week. MAIN MEASURES: Psychopathological features of patients were evaluated with the Neuropsychiatric Inventory and Cornell Scale for Depression in Dementia. Caregivers were evaluated using the Neuropsychiatric Inventory-Distress and Burden Interview. A two-way analysis of variance (ANOVA) was applied to observe interactions (pre- vs. post-intervention; participants vs. controls). RESULTS: Patients from the intervention presented a significant reduction in neuropsychiatric conditions when compared to controls (Neuropsychiatric Inventory: F∶11.12; p = 0.01; Cornell Depression scale: F∶11.97; p = 0.01). The burden and stress of caregivers responsible for patients who participated in the intervention significantly decreased when compared to caregivers responsible for controls (Neuropsychiatric Inventory-Distress: F: 9.37; p = 0.01; Burden Interview: F: 11.28; p = 0.01). CONCLUSIONS: Aerobic exercise was associated with a reduction in the neuropsychiatric symptoms and contributed to attenuate the caregivers' burden. However, the researchers were not blinded to the patient's intervention status, which constitutes an important limitation of this study. PMID:21915483

Obtaining Information from Family Caregivers Is Important to Detect Behavioral and Psychological Symptoms and Caregiver Burden in Subjects with Mild Cognitive Impairment.

PubMed

Yamagami, Tetsuya; Harada, Kazuhiro; Hashidate, Hiroyuki; Asakawa, Yasuyoshi; Nihei, Kenji; Kaneya, Satomi; Yoshii, Chiharu

2016-01-01

The objectives of this study are to clarify the differences between the difficulties in daily life experienced by patients with both mild cognitive impairment (MCI) and chronic disease and those experienced by healthy elderly individuals. We assessed (a) cognitive function; (b) gait ability; (c) behavioral and psychological symptoms (observed at home); (d) activities of daily living (observed at home); (e) family caregiver burden, and (f) intention to continue family caregiving of 255 cognitively normal and 103 MCI subjects attending adult day care services covered by long-term care insurance, and compared the two groups. Subjects with MCI display more behavioral and psychological symptoms than cognitively normal subjects, posing a heavy caregiver burden (p < 0.01). Behavioral and psychological symptoms most commonly observed in subjects with MCI are apathy, hallucinations, delusions, agitation, and aberrant motor behavior. Information regarding the behavioral and psychological symptoms displayed at home by patients with MCI can only be obtained from family caregivers living with the patients. To provide early-stage support for elderly patients with MCI, adult day care workers should collect information from family caregivers regarding behavioral and psychological symptoms observed at home.

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

PubMed

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

[Burden in caregivers of psychiatric patients attending psychodynamic multifamily groups: preliminary results of an empirical study].

PubMed

Gargano, Maria Teresa; Serantoni, Grazia; Ceppi, Fiorella; D'Alema, Marco; Ferraris, Luisella; Innocente, Paola; Lanzi, Fiorella; Narracci, Andrea; Russo, Federico; Venier, Marcella

2016-01-01

The main aim of this study is to investigate the burden in relatives of psychiatric patients attending long-term psychodynamic multifamily groups (18 months) of some Mental Health Departments of Lazio Region. A further aim is to verify if the decrease of the burden and the group participation are associated with a reduction of psychiatric symptoms in patients. The sample consisted of 13 patients (10 men and 3 women) with severe personality disorder with at least one psychotic episode and 42 caregivers (15 men and 27 women). We administered a psychiatric protocol composed of the MCMI-III for the patients and QRS for the caregivers. The results show a reduction of the subjective burden especially in mothers (F=4.231; sig.=.021). Further results show that the reduction of anxiety (F=1.446; p<.001), somatoform (F=3.573; p<.001), dysthymia (F=2.203; p<.001) and thought disorder (F=2.992; p<.001) in the patients is influenced by the relationship between the "time spent in group" and the "lower subjective burden". These results suggest a burden decrease, particularly in women caregivers, with direct effects on the structural modifications of the severe syndromes in psychiatric patients.

A systematic review of Indigenous caregiver functioning and interventions.

PubMed

Hokanson, Lesli; Quinn, Michael Gerhardt; Schüz, Natalie; de Salas, Kristy; Scott, Jenn

2018-03-21

There is a global increase in chronic, degenerative illnesses that require long-term intervention and support as a result of the aging population. The majority of support needs are met by informal family caregivers. While there have been three decades of research focusing on caregivers in general, the extent to which research has focused on Indigenous caregivers is unclear. Worldwide, Indigenous peoples face severe economic and health disadvantages that may make them even more vulnerable to the negative aspects of informal caregiving. The current systematic review aimed to synthesize the extant literature on Indigenous caregiver functioning and the interventions that are efficacious in alleviating Indigenous caregiver distress. Systematic review Inclusion criteria were peer-reviewed quantitative studies examining Indigenous caregiver functioning or evaluating Indigenous caregiver interventions. 1172 unique records were located in the final search undertaken; only 7 articles, representing 6 unique studies, met the full inclusion criteria. Most studies contained numerous methodological weaknesses that compromised the reliability and validity of findings. Available studies suggest poor health and high burden among Indigenous relative to non-Indigenous caregivers. However, high levels of positive aspects of caregiving were reported in one study. A single intervention study suggests that poor health outcomes among Indigenous caregivers can be alleviated, though the quality and focus of this study was sub-optimal. Overall, there is very little quality evidence around Indigenous caregiver functioning. Future research in this area would benefit from greater adherence to the standards of research that contribute to a strong and reliable evidence base.

Emotion Detection Deficits and Decreased Empathy in Patients with Alzheimer’s Disease and Parkinson’s Disease Affect Caregiver Mood and Burden

PubMed Central

Martinez, Maria; Multani, Namita; Anor, Cassandra J.; Misquitta, Karen; Tang-Wai, David F.; Keren, Ron; Fox, Susan; Lang, Anthony E.; Marras, Connie; Tartaglia, Maria C.

2018-01-01

Background: Changes in social cognition occur in patients with Alzheimer’s disease (AD) and Parkinson’s disease (PD) and can be caused by several factors, including emotion recognition deficits and neuropsychiatric symptoms (NPS). The aims of this study were to investigate: (1) group differences on emotion detection between patients diagnosed with AD or PD and their respective caregivers; (2) the association of emotion detection with empathetic ability and NPS in individuals with AD or PD; (3) caregivers’ depression and perceived burden in relation to patients’ ability to detect emotions, empathize with others, presence of NPS; and (4) caregiver’s awareness of emotion detection deficits in patients with AD or Parkinson. Methods: In this study, patients with probable AD (N = 25) or PD (N = 17), and their caregivers (N = 42), performed an emotion detection task (The Awareness of Social Inference Test—Emotion Evaluation Test, TASIT-EET). Patients underwent cognitive assessment, using the Behavioral Neurology Assessment (BNA). In addition, caregivers completed questionnaires to measure empathy (Interpersonal Reactivity Index, IRI) and NPS (Neuropsychiatric Inventory, NPI) in patients and self-reported on depression (Geriatric Depression Scale, GDS) and burden (Zarit Burden Interview, ZBI). Caregivers were also interviewed to measure dementia severity (Clinical Dementia Rating (CDR) Scale) in patients. Results: The results suggest that individuals with AD and PD are significantly worse at recognizing emotions than their caregivers. Moreover, caregivers failed to recognize patients’ emotion recognition deficits and this was associated with increased caregiver burden and depression. Patients’ emotion recognition deficits, decreased empathy and NPS were also related to caregiver burden and depression. Conclusions: Changes in emotion detection and empathy in individuals with AD and PD has implications for caregiver burden and depression and may be amenable

Perceived health, caregiver burden, and quality of life in women partners providing care to Veterans with traumatic brain injury.

PubMed

Saban, Karen L; Griffin, Joan M; Urban, Amanda; Janusek, Marissa A; Pape, Theresa Louise-Bender; Collins, Eileen

2016-01-01

Families of Veterans with traumatic brain injury (TBI) are often faced with providing long-term informal care to their loved one. However, little is known about how their perceived health and caregiving burden contribute to their quality of life (QOL). The purpose of this descriptive study was to describe perceived health, somatic symptoms, caregiver burden, and perceived QOL and to identify the extent to which these variables are associated with QOL in female partners/spouses of Veterans with TBI. Participants completed a written questionnaire including the Patient Health Questionnaire-15, Caregiver Reaction Assessment, Quality of Life Index, and the general health subscale of the 12-Item Short Form Survey version 2. Caregivers reported moderate levels of QOL, and over a quarter of the sample reported high levels of somatic symptoms, particularly fatigue and sleep disturbance. Age, perceived general health, somatic symptoms, the five subscales of caregiver burden (self-esteem, disrupted schedule, effect on finances, lack of family support, and effect on health) predicted QOL and explained 64% of its variance (adjusted r 2 = 0.64, F(8,31) = 9.59). However, only somatic symptoms and the caregiver burden subscales of self-esteem and effect on finances were significant predictors in the model. These findings have implications for development of family-centered interventions to enhance the QOL of informal caregivers of Veterans with TBI.

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

PubMed

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 TECH@HOME study, a technological intervention to reduce caregiver burden for informal caregivers of people with dementia: study protocol for a randomized controlled trial.

PubMed

Malmgren Fänge, Agneta; Schmidt, Steven M; Nilsson, Maria H; Carlsson, Gunilla; Liwander, Anna; Dahlgren Bergström, Caroline; Olivetti, Paolo; Johansson, Per; Chiatti, Carlos

2017-02-09

It is estimated that global dementia rates will more than triple by 2050 and result in a staggering economic burden on families and societies. Dementia carries significant physical, psychological and social challenges for individuals and caregivers. Informal caregiving is common and increasing as more people with dementia are being cared for at home instead of in nursing homes. Caregiver burden is associated with lower perceived health, lower social coherence, and increased risk of morbidity and mortality. The aim of this trial is to evaluate the effects of information and communication technology (ICT) on caregiver burden among informal caregivers of people with dementia by reducing the need for supervision. This randomized controlled trial aims to recruit 320 dyads composed of people with dementia living in community settings and their primary informal caregivers. In the intervention group, people with dementia will have a home monitoring kit installed in their home while dyads in the control group will receive usual care. The ICT kit includes home-leaving sensors, smoke and water leak sensors, bed sensors, and automatic lights that monitor the individual's behavior. Alerts (text message and/or phone call) will be sent to the caregiver if anything unusual occurs. All study dyads will receive three home visits by project administrators who have received project-specific training in order to harmonize data collection. Home visits will take place at enrollment and 3 and 12 months following installation of the ICT kit. At every home visit, a standardized questionnaire will be administered to all dyads to assess their health, quality of life and resource utilization. The primary outcome of this trial is the amount of informal care support provided by primary informal caregivers to people with dementia. This is the first randomized controlled trial exploring the implementation of ICT for people with dementia in a large sample in Sweden and one of the first at the

Cross-national differences in the prevalence and correlates of burden among older family caregivers in the WHO World Mental Health (WMH) Surveys

PubMed Central

Shahly, V.; Chatterji, S.; Gruber, M. J.; Al-Hamzawi, A.; Alonso, J.; Andrade, L. H.; Angermeyer, M. C.; Bruffaerts, R.; Bunting, B.; Caldas-de-Almeida, J. M.; de Girolamo, G.; de Jonge, P.; Florescu, S.; Gureje, O.; Haro, J. M.; Hinkov, H. R.; Hu, C.; Karam, E. G.; Lépine, J.-P.; Levinson, D.; Medina-Mora, M. E.; Posada-Villa, J.; Sampson, N. A.; Trivedi, J.K.; Viana, M. C.; Kessler, R. C.

2014-01-01

Background Current trends in population aging affect both recipients and providers of informal family caregiving, as the pool of family caregivers is shrinking while demand is increasing. Epidemiologic research has not yet examined the implications of these trends for burdens experienced by aging family caregivers. Methods Cross-sectional community surveys in 20 countries asked 13,892 respondents ages 50+ about the objective (time, financial) and subjective (distress, embarrassment) burdens they experience in providing care to first-degree relatives with 12 broadly-defined serious physical and mental conditions. Differential burden was examined by country income category, kinship status, and type of condition. Results Among the 26.9-42.5% respondents in high, upper-middle, and low/lower-middle income countries reporting serious relative health conditions, 35.7-42.5% reported burden. Of those, 25.2-29.0% spent time and 13.5-19.4% money, while 24.4-30.6% felt distress and 6.4-21.7% embarrassment. Mean caregiving hours/week given any was 16.6-23.6 (169.9-205.8 hours/week/100 people ages 50+). Burden in low/lower-middle income countries was 2-3-fold higher than in higher income countries, with financial burden given any averaging 14.3% of median family income in high, 17.7% in upper-middle, and 39.8% in low/lower-middle income countries. Higher burden was reported by women than men and for conditions of spouses and children than parents or siblings. Conclusions Uncompensated family caregiving is an important societal asset that offsets rising formal healthcare costs. However, the substantial burdens experienced by aging caregivers across multiple family health conditions and geographic regions threaten the continued integrity of their caregiving capacity. Initiatives supporting older family caregivers are consequently needed, especially in low/lower-middle income countries. PMID:22877824

Quality of Life, Stigma and Burden Perception Among Family Caregivers and Patients with Psychiatric Illnesses in Jordan.

PubMed

Dalky, Heyam F; Qandil, Abeer M; Natour, Ahlam Sh; Janet, Meininger C

2017-04-01

The literature reported several factors which could impact the quality of life of caregivers and patients with psychiatric illnesses. This study aimed to determine the level of quality of life among a sample of 532 of caregivers and patients with psychiatric illness at two out-patient mental health clinics in Northern Jordan, and to examine the relationships of sociodemographic characteristics, stigma and caregiver perceptions of burden with quality of life. A correlational descriptive design was utilized. Three self-administered questionnaires were used. Results indicated that patients had low to moderate QOL, and they suffered moderate to high stigma. Also, family caregivers perceived low to moderate QOL. Patients' and family caregivers' stigma perception correlated negatively and significantly with WHOQOL-BREF. Family caregivers' burden correlated negatively and significantly with all domains of WHOQOL-BREF, total QOL-100, and self-reported general health. Health care providers should assure the importance of focusing more toward minimizing stigma and promoting physical and general health to maintain a good quality of life of caregivers and patients with mental illnesses.

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

PubMed

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 <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 and 37% had favorable burden. The mean score of burden was 28±12.75. A statistically significant positive 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

Burden, quality of life, and social support in caregivers of patients undergoing radiotherapy for head and neck cancer: A pilot study

PubMed Central

Nightingale, Chandylen L; Curbow, Barbara A; Wingard, John R; Pereira, Deidre B; Carnaby, Giselle D

2017-01-01

Objective The purpose of this pilot study was to (1) obtain preliminary data on changes in burden and quality of life in head and neck cancer caregivers during and shortly following patient radiotherapy, (2) assess the relationship between perceived social support and burden as well as perceived social support and quality of life in caregivers during radiotherapy, and (3) identify preferences for sources of support among caregivers during radiotherapy. Methods Caregivers completed burden and quality of life instruments at the start of patient radiotherapy (T1), 5 weeks into radiotherapy (T2), and 1 month post-radiotherapy (T3) and instruments for perceived social support and support preferences at T2 only. Results Caregivers showed a trend toward increased burden and worsened quality of life for the majority of subscales at T2 or T3 than at T1. Caregivers reported significantly lower esteem and significantly greater disruption at T2 than at T1 and significantly worse health at T3 than at T2. Higher perceived social support was typically associated with lower burden and higher quality of life at T2. Spouses/partners were the most commonly preferred source of support. Discussion These pilot findings suggest that caregivers experience psychosocial impairments during and shortly after patient radiotherapy, but more research using larger samples is warranted. PMID:27068111

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

PubMed

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.

Caregiver Burdens and Preventive Dental Care for Children with Autism Spectrum Disorder, Developmental Disability and/or Mental Health Conditions: National Survey of CSHCN, 2009-2010.

PubMed

Wiener, R Constance; Vohra, Rini; Sambamoorthi, Usha; Madhavan, S Suresh

2016-12-01

Objective The purpose of this study is to examine the burdens of caregivers on 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.

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

PubMed

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.

[Effects of Family Support Programs for Caregivers of People with Dementia - Caregiving Burden, Depression, and Stress: Systematic Review and Meta-analysis].

PubMed

Park, Seyeon; Park, Myonghwa

2015-10-01

The objective of this systematic review was to assess the effects of family support programs on caregiving burden, depression, and stress in family caregivers of people with dementia. A literature search was conducted of electronic databases to identify randomized controlled studies with family support programs done between 2000 and 2014. Studies published in English and/or Korean were included for the analysis with search strategies adapted from the Cochrane Dementia and Cognitive Improvement Group. Studies were rated for quality assessment by two independent reviewers using the appraisal checklist developed by Cochrane Reviews and Dissemination. Of 8,334 articles identified in the literature search, full texts of 76 articles that met the inclusion criteria were reviewed and 38 were found to include relevant outcomes. Results from selected studies were pooled in statistical meta-analysis using Review Manager Software and heterogeneity between combined studies was assessed using the Chi-square test. Meta-analysis showed that the effect sizes of family caregiver support programs were small to medium for categories of caregiving burden (Hedge's g=-0.17, 95% CI=-0.30~-0.04), depression (Hedge's g=-0.30, 95% CI=-0.40~-0.20), and stress (Hedge's g=-0.39, 95% CI=-0.52~-0.25). The review results indicate that a support programs can assist family caregivers in reducing their psycho-emotional distress.

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

ERIC Educational Resources Information Center

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…

The burden and quality of life of caregivers of sickle cell anemia patients taking hydroxyurea versus those not taking hydroxyurea

PubMed Central

da Silva, Luiz Bernardino Lima; Ivo, Maria Lúcia; de Souza, Albert Schiaveto; Pontes, Elenir Rose Jardim Cury; Pinto, Alexandra Maria Almeida Carvalho; de Araujo, Olinda Maria Rodrigues

2012-01-01

Objective To assess the burden and quality of life of caregivers of patients with sickle cell anemia taking hydroxyurea versus those of patients not taking hydroxyurea. Methods A cross-sectional study was performed of caregivers of outpatients with sickle cell anemia in two public hospitals in Campo Grande, MS, from January through June 2010. The World Health Organization Quality of Life-BREF Scale and the Caregiver Burden Scale were used. Results Of the 37 caregivers in this study, 81.1% were women, 73.0% were mothers, 59.5% were married, 54.1%were mulattos, 48.6% were housewives, 54.1% had family incomes of up to one minimum wage and 75.7% had onlycompleted elementary education. The mean duration of care provided (time after diagnosis) was 16.08 ± 9.88 yearsand 89.2% reported that they provided 24-hour care. Regarding health, 27.0% of study participants reported having physical and 13.5% emotional problems. There were no significant relationships between these variables either with the different domains or the total score of the WHOQOL-BREF comparing caregivers of patients taking hydroxyurea versusthose of patients not taking hydroxyurea. There was a moderate negative linear correlation between the WHOQOL-BREF and the Caregiver Burden Scale scores (linear correlation test of Pearson: p-value = 0.003, r = -0.477). The burden of caregivers of patients who did not take hydroxyurea was significantly higher than those of patients who took the medication in terms of general tension, disappointment, environment and total score (student t-test: p-value < 0.05). Conclusion In the perception of the caregiver, looking after sickle cell anemia patients represents a moderate negative burden. PMID:23049439

Burden reduction of caregivers for users of care services provided by the public long-term care insurance system in Japan.

PubMed

Umegaki, Hiroyuki; Yanagawa, Madoka; Nonogaki, Zen; Nakashima, Hirotaka; Kuzuya, Masafumi; Endo, Hidetoshi

2014-01-01

We surveyed the care burden of family caregivers, their satisfaction with the services, and whether their care burden was reduced by the introduction of the LTCI care services. We randomly enrolled 3000 of 43,250 residents of Nagoya City aged 65 and over who had been certified as requiring long-term care and who used at least one type of service provided by the public LTCI; 1835 (61.2%) subjects returned the survey. A total of 1015 subjects for whom complete sets of data were available were employed for statistical analysis. Analysis of variance for the continuous variables and χ(2) analysis for that categorical variance were performed. Multiple logistic analysis was performed with the factors with p values of <0.2 in the χ(2) analysis of burden reduction. A total of 68.8% of the caregivers indicated that the care burden was reduced by the introduction of the LTCI care services, and 86.8% of the caregivers were satisfied with the LTCI care services. A lower age of caregivers, a more advanced need classification level, and more satisfaction with the services were independently associated with a reduction of the care burden. In Japanese LTCI, the overall satisfaction of the caregivers appears to be relatively high and is associated with the reduction of the care burden. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.